5

Implementing the Standard of Care

CHAPTER SUMMARY

Chapter 4 put forth a model (standard of care) for addressing psychosocial health needs. This chapter presents real-life illustrations of how this standard is already being implemented by some oncology practices and can be implemented by others, illustrating the feasibility of meeting the standard of care in situations with varying levels of resources.

Patients diagnosed with cancer are treated by many different types of clinicians across all phases of their cancer care. Some of these clinicians specialize in oncology; others, such as primary care physicians and general surgeons, have a patient population that is more heterogeneous with respect to diagnosis. The committee believes that all clinicians providing care for patients with cancer should attend to psychosocial health needs as part of their practice, but that oncologists can and should lead the way in addressing these needs. The committee therefore recommends that all providers of cancer care institute reliable processes to meet the standard of psychosocial health care. The National Cancer Institute (NCI), organizations setting standards for cancer care, and consumer advocacy organizations should promote these efforts by incorporating the recommended standard of care into their agendas, protocols, policies, and standards. NCI, the Centers for Medicare & Medicaid Services, and the Agency for Healthcare Research and Quality, individually or together, should conduct a program designed to demonstrate additional approaches to meeting the standard of care in different geographic areas and care settings, with more vulnerable populations, and in locations with varying resources.

Cancer treatment is delivered in a variety of settings, including, for example, the practices of medical oncologists; primary care providers;



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5 Implementing the Standard of Care CHAPTER SUMMARY Chapter  put forth a model (standard of care) for addressing psy- chosocial health needs. This chapter presents real-life illustrations of how this standard is already being implemented by some oncology practices and can be implemented by others, illustrating the feasibility of meeting the standard of care in situations with arying leels of resources. Patients diagnosed with cancer are treated by many different types of clinicians across all phases of their cancer care. Some of these clinicians specialize in oncology; others, such as primary care physicians and gen- eral surgeons, hae a patient population that is more heterogeneous with respect to diagnosis. The committee beliees that all clinicians proiding care for patients with cancer should attend to psychosocial health needs as part of their practice, but that oncologists can and should lead the way in addressing these needs. The committee therefore recommends that all proiders of cancer care institute reliable processes to meet the standard of psychosocial health care. The National Cancer Institute (NCI), organiza- tions setting standards for cancer care, and consumer adocacy organiza- tions should promote these efforts by incorporating the recommended standard of care into their agendas, protocols, policies, and standards. NCI, the Centers for Medicare & Medicaid Serices, and the Agency for Healthcare Research and Quality, indiidually or together, should conduct a program designed to demonstrate additional approaches to meeting the standard of care in different geographic areas and care settings, with more ulnerable populations, and in locations with arying resources. Cancer treatment is delivered in a variety of settings, including, for example, the practices of medical oncologists; primary care providers; 21

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220 CANCER CARE FOR THE WHOLE PATIENT surgeons; radiologists; and other specialists, such as hematologists and urol- ogists (see Table 5-1).1 As stated in Chapter 4, the committee believes that the delivery of psychosocial health services should occur from diagnosis through all stages of the illness, and therefore, the standard for delivering psychosocial health care articulated in Chapter 4 should guide the activities of all clinicians delivering cancer care. Nonetheless, as adult and pediatric oncologists are recognized specialists in the delivery of cancer care, they should lead the way in implementing this standard of care. This chapter focuses on how they can do so. APPROACHES TO THE DELIVERY OF PSYCHOSOCIAL HEALTH SERVICES As of 2005, an estimated 12,000 oncologists practiced in the United States in a variety of practice settings and arrangements, including teaching hospitals (33 percent), group practices (46 percent), solo practices (9 per- cent), and other arrangements. The majority of oncologists (56 percent) worked with nurse practitioners and physician assistants who provided patient education and counseling, pain and symptom management, follow- up care for patients in remission, and other activities as part of patient care (AAMC Center for Workforce Studies, 2007). Oncology practices can take two general approaches to the delivery of psychosocial health services in accordance with the model and standard for care set forth in Chapter 4: (1) providing the needed services and interven- tions directly themselves by offering collocated, integrated psychosocial and biomedical health care, or (2) establishing effective linkages and coor- dination of care with other providers.2 This chapter describes and provides real-life examples of both approaches. Also described is a third approach, a potential variation on the second that involves the use of remote providers of psychosocial health services and can be employed in communities that lack substantial psychosocial health care resources. Many organizations blend these approaches, collocating some psy- chosocial health services on site while coordinating and supplementing 1 The committee located no data describing how cancer care differs across these different settings of care. 2 The committee recognizes that there are cases in which another party (e.g., another health care provider treating a serious comorbid condition or a designated intermediary, such as a disease management entity) also has responsibility for securing appropriate psychosocial health services. However, the committee does not distinguish this as a separate approach to imple- menting the model because coordination of care requires effective linkages among all parties involved, and because at present and for the foreseeable future, the committee believes that the dangers of too little attention to psychosocial problems outweigh the dangers of duplicative attention to those problems.

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221 IMPLEMENTING THE STANDARD OF CARE TABLE 5-1 Distribution of Adult Ambulatory Cancer Care Visits by Site of Visit, Physician Specialty, and Clinic Type, United States, 2001–2002a Visit Characteristic Number/Percentage Annual number of visits (in 1,000s) 20,574 Site of visit (%) Physician’s office 89 Hospital outpatient department 11 Physician office visitsb (%) Oncology 18 Primary care 32 General surgery 10 Specialty surgery 3 Dermatology 7 Urology 14 Other medical specialty 15 Hospital outpatient departmentc (%) General medicine 78 Surgery 14 Other 8 aAdults were categorized as being aged 25 and older. Visits for non-melanoma skin cancer were excluded. bRadiologists were excluded from the sample of office-based physicians. cClinics providing chemotherapy, radiotherapy, physical medicine, and rehabilitation were excluded from the sample of hospital outpatient departments. SOURCE: Analyses of the 2001 and 2002 National Ambulatory Medical Care Survey and the National Hospital Ambulatory Medical Care Survey, as presented in IOM and NRC, 2006. their services with the delivery of other services from off-site providers. As discussed in Chapter 4, there is some evidence that collocated, integrated services are more effective than arrangements with off-site providers in ensuring that patients receive necessary care (Friedmann et al., 2000). In- tegrating psychosocial health care into medical care settings also facilitates patient follow-through on referrals, and allows for better communication between individuals caring for patients and easy exchange of expertise (Pincus, 2003). Studies of care collaboration also have shown that physi- cal proximity facilitates collaboration among health care providers (IOM, 2004). However, when physical collocation of services is not possible, other strategies for linking patients with needed services are required. Approach 1: Collocated, Integrated Psychosocial and Biomedical Health Care In this approach, all components of the model described in Chapter 4 (identification of individuals with psychosocial health needs, care planning,

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222 CANCER CARE FOR THE WHOLE PATIENT linking of patients to providers of the needed services, support for patients in illness self-management, coordination of psychosocial with biomedical health care, and follow-up) take place at the same site where biomedical health care is provided, as well as some psychosocial health services. The physical plant and personnel requirements for implementing this approach are substantial. Examples are found in clinics attached to academic medical centers, but also in some leading community-based oncology practices. Examples The Rebecca and John Moores Cancer Center, University of California, San Diego The Moores Cancer Center’s Science of Caring Program pro- vides comprehensive psychosocial health care integrated with biomedical treatment for all patients with cancer seen in its outpatient clinic. At each outpatient’s initial visit, patient and family meet with a social worker who provides printed information about the psychosocial health services offered on site and an orientation to these services. At this first visit (and at regular intervals thereafter), every patient also uses a laptop computer to complete a simple touch-screen questionnaire—“How Can We Help You and Your Family?”—developed by the center. The questionnaire consists of a list of problems faced by patients with cancer. Patients are asked to identify the extent to which each problem affects them and whether they would like any help in dealing with it. Patients’ responses (encrypted for privacy) are quickly disseminated by e-mail to their health care team of physicians, nurses, psychologists, and social workers. The data are also transmitted automatically to a software program that allows for their analysis. Patients are linked to needed psychosocial health services in multiple ways. First, the computer-based screening program provides an automatic link. For some problems, such as those involving transportation, the pro- gram generates a printout of resources that is presented to patients by administrative staff3 at the end of their appointment. For problems requir- ing a more complex intervention, the automated screening tool generates an e-mail to the team member with the expertise to address the problem. Full-time, on-site social workers also provide case management and refer patients to a wide variety of psychosocial health services available on site (e.g., support groups, educational seminars, psychotherapy, stress manage- ment) and from providers in the community. Psychosocial care is coordinated with medical care by several means. The collocation of psychosocial and biomedical services facilitates timely 3 Administrative staff also receive training and monthly updates on the value of the screen- ing process.

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22 IMPLEMENTING THE STANDARD OF CARE and direct face-to-face communication among providers. Additional com- munication takes place during weekly team meetings and monthly meet- ings with community partners. A designated community health program manager creates linkages between the cancer center and community groups. The center has integrated, on-site relationships with The Wellness Commu- nity, the American Cancer Society (ACS), San Diego Hospice, and ACS’s Cancer Navigator Program, among others. Patients and families receive help in illness self-management through an individualized orientation pro- gram designed to empower, inform, and guide them through treatment. A centrally located Patient and Family Education Center staffed by trained volunteers (most of whom are cancer survivors) offers computers with guided navigation to sources of information and services; information in print and video form; and donated items such as blankets, pillows, hats, and wigs. A Patient Advisory Council chaired by a family caregiver also meets monthly and makes specific recommendations to center leadership. For example, the council reviewed the center’s physical plant before the center opened, and reviews all marketing materials, website designs, and patient education materials. Follow-up on the receipt of needed services, their effectiveness, and the need for any changes occurs in multiple ways. Rescreening of each patient takes place whenever there is a change in treatment (unless the person was screened within the past 30 days) or every 2 months, whichever comes first. Program evaluation also takes place on a quarterly basis when a random chart audit is performed. The program staff includes eight social workers, one psychologist, one psychology fellow, a part-time psychiatrist, one community outreach man- ager, and many students. Social workers are funded with “hard money” as part of the center’s ongoing personnel budget. Although the psychologist bills for services provided, complete reimbursement often does not occur because of low payment rates and failure to receive any reimbursement when the provider is outside the network of some third-party insurers (see Chapter 6 for a discussion of this issue). Funding for the psychosocial pro- gram comes from philanthropy, the cancer center itself, clinical fees, shared programs with community groups, and grants. The director of the program spends substantial time fundraising for an endowed foundation to cover the costs of nonreimbursed services. As a result of this year-and-a-half-old program, the center’s scores on its annual Press-Ganey Oncology Outpatient patient satisfaction survey have tripled. The director identifies two characteristics of the program as key to its success: (1) the collocation and integration of its services with biomedi- cal cancer care; and (2) its active alliances with community organizations (e.g., the center implements programs for The Wellness Community at the

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22 CANCER CARE FOR THE WHOLE PATIENT center and in the community, and The Wellness Community in turn pays in part for the services of a psychologist).4 The West Clinic, Memphis, Tennessee The West Clinic consists of three free-standing ambulatory oncology practices in metropolitan Memphis plus three satellite offices 60–90 minutes away from the main offices. Screening of patients for psychosocial health problems and quality-of-life assessment take place at every visit by means of the computer-based Patient Care Moni- tor (PCM) screening instrument (described in Chapter 4), which quickly collects information from individuals about their cancer-related symptoms while they are in the waiting room before meeting with the clinician. Validated instruments gauge pain levels, fatigue, and mental health status. Results are scored and attached to the patient’s chart. More in-depth as- sessment of individuals experiencing significant distress is provided by psychologists located at the largest site (but able to travel to other sites as needed). For some psychosocial health problems, patients receive the needed services directly on site; for others, they are referred to resources in the community by clinic nurses and social workers on an ad hoc basis. Some psychosocial services are offered at the three main ambulatory oncology clinics through on-site psychologists, social workers, nurses, palliative care specialists, other professional psychosocial staff, and volunteers, with dedi- cated space provided for nonclinical activities. A quality-of-life interview and information session with a psychologist are offered to every patient and family prior to the start of treatment. Many psychosocial services are also provided by West Clinic’s approximately 200 trained6 volunteers through a practice-based 501c3 foundation created by the clinic (Wings Cancer Foun- dation). Coordination of psychosocial and biomedical care is accomplished through collocated psychosocial and medical personnel. The Wings Cancer Foundation offers support to patients and families in illness self-management through support groups, a lending library, nu- tritional counseling, exercise and strength building, yoga and relaxation classes, and crisis intervention. In addition, a separate patient education system provides wireless, notebook-sized computers (e-tablets) that pa- tients use while waiting for their appointments or receiving treatment. The e-tablets deploy a proprietary intranet or Internet-based system called the Cancer Support Network, which provides patients with targeted educational 4 Personal communication, Matthew J. Loscalzo, MSW, Director of Patient and Family Sup- port Program, Rebecca and John Moores UCSD Cancer Center, March 12, 2007. 5 Personal communication, Lee Schwartzberg, MD, Medical Director, April 13, 2007. 6 Volunteers undergo formal training on such issues as patient safety, communication, and the Health Insurance Portability and Accountability Act.

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22 IMPLEMENTING THE STANDARD OF CARE information in text, graphic, video, and audio formats on a wide range of topics such as pain management, symptoms and treatment of psychological distress, and other matters relevant to cancer care. The West Clinic credits the commitment of its leadership for its success in building the infrastructure and resources needed to deliver integrated psychosocial and biomedical health services in the context of a community- based practice. Discussion As discussed in Chapter 4, the benefits of collocated, integrated psycho- social and biomedical health care services include better access to needed services for patients and greater ease of communication and coordination between collocated providers. Moreover, some comprehensive programs, such as that of the Moore Center, offer their services to the community at large. The difficulties of this approach are that it requires a physical plant large enough to accommodate diverse personnel and a sufficiently large and varied labor pool in the community to staff interdisciplinary teams. Moreover, some experts in pediatric cancer care report that some cancer survivors do not want to receive services from the center in which they re- ceived their cancer care when it is no longer necessary because of negative emotions associated with the facility, a desire to “get on with their life,” or the geographic inaccessibility of the facility (Friedman et al., 2006). When collocation of services is either infeasible or undesirable, psychoso- cial health services can be obtained through other community providers (Approach 2) or potentially through providers located remotely from the patient using telephone or Internet access (Approach 3). Approach 2: Provision of Psychosocial Health Services Using Local Resources Examples Kansas City Cancer Center7 (KCCC) is a full-service medical and radiation oncology practice that includes 29 medical oncologists, 8 radiation on- cologists, and 11 oncology nurse practitioners (NPs) and oncology certified nurses. The center addresses patients’ psychosocial health problems not by providing the needed services on site to the approximately 200–300 patients seen each day at its 11 urban/suburban locations, but by linking patients with community providers. 7 Personalcommunication, John E. Hennessy, Nancy J. Washburn, and Barbara W. Adkins, Kansas City Cancer Center, March 13, 2007.

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22 CANCER CARE FOR THE WHOLE PATIENT KCCC NPs screen patients at their initial and subsequent visits using a one-page screening tool to detect depression, pain, fatigue, and other prob- lems. If the patient answers yes to either of the first two questions (a two- question depression screening tool), the Patient Health Questionnaire-9 (PHQ-9) screening tool for depression is administered to help determine whether the patient is in fact experiencing depression. Positive findings are addressed using a treatment algorithm standardized across clinical sites (Adkins et al., 2005).8 If an intervention is established, the NP documents it in a note that the physician reviews so as to be able to follow up on the symptoms. The patient may also have a follow-up visit with the NP. NPs and physicians often alternate seeing patients in order to assess the physical, psychosocial, and spiritual needs of patients. Based on the results of the screen and periodic psychosocial assessments, KCCC nurses link patients with multiple psychosocial services available in the Kansas City area. Cancer Action, for example, is a community-based nonprofit agency in Kansas City offering an array of programs and services that address the physical, social, emotional, financial, and spiritual needs of people with cancer and their families and friends. All Cancer Action pro- grams and services are free of charge (see http://www.canceractionkc.org). For patients who are uninsured or underinsured, Swope Parkway Health Center, Catholic Charities, the Alliance for the Mentally Ill of Greater Kan- sas City, Samuel Rodgers Health Center, and Kansas City Free Health Clinic offer mental health counseling either free of charge or on a sliding scale. KCCC also has partnered with Metro CARE, WyJoCARE, and Northland CARE, organizations of specialists that have agreed to take a limited num- ber of uninsured patients. For patients who are working, many employers have employee assistance programs that offer counseling free of charge. If the employees need further counseling, KCCC refers them to a counselor for continuation of care. If there is no employee assistance program where patients work, they are referred based on their insurance. KCCC also partners with Turning Point: The Center for Hope and Healing, a 5-year-old 501c3 organization whose mission is to strengthen resilience in individuals living with cancer or other serious or chronic ill- nesses by providing education and other tools to help them manage their illness and live life to its fullest. Turning Point served approximately 3,400 people in the Kansas City area in 2006; approximately 85 percent of these were cancer patients, 55 percent of whom were referred by KCCC. The more than 50 different education and support programs provided by Turning Point to adults, children, families, and friends include counseling; exercise classes; nutrition classes; and specialized classes such as Surviving 8 KCCC partnered with the Mid America Coalition for Health Care to create the treatment algorithm. The coalition also recommended the use of the PHQ-9 tool.

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22 IMPLEMENTING THE STANDARD OF CARE and Thriving, a comprehensive program for those having completed cancer treatment and having no signs of disease, as well as a program for people being treated for stage 3 or 4 cancer. Group programs are provided free of charge to participants as a result of extensive partnerships with area health care providers, employers, and others whose contributions pay for the services. Although individual counseling generally requires payment of a fee, Kansas City Turning Point provides up to five counseling visits free of charge to KCCC patients or family members if the patient has ad- vanced disease. Turning Point is unique in that its services are not just for individuals dealing with cancer, an approach that may be more feasible in less densely populated areas that may have fewer patients with cancer and fewer community organizations dedicated to cancer care. The number of individuals being served by Turning Point is growing at an average rate of 64 percent annually.9 KCCC NPs also help patients manage their illness by providing them detailed, one-on-one education on treatment and management of the side effects of chemotherapy. Psychosocial health issues are addressed not only during but also after treatment. KCCC has a survivorship program that provides education about the adjustments required after treatment. Pa- tients are given the LieStrong® Survivorship Notebook, which contains information on the emotional effects of cancer. In addition, NPs meet with patients approximately 2 months after completion of treatment to address survivorship issues. Care coordination and follow-up are provided by the NPs, who per- form these activities as part of their regular patient care. KCCC bills and receives reimbursement for NP assessment, linkage, coordination, and fol- low-up activities from both government and nongovernment payors (this reimbursement approach is discussed in Chapter 6). No other foundation or special funding subsidizes these activities. KCCC does have a fund set up with the greater Kansas City Community Foundation, but is restricted from using these funds to subsidize the costs of operations; rather, this money is used to fund communitywide cancer education, awareness, and prevention activities. Another fund, created by one patient’s family, pro- vides oral chemotherapy drugs to patients who cannot afford them; this fund is administered by Cancer Action, which processes applications and determines eligibility. Tahoe Forest Cancer Center (TFCC), located in Truckee, California (in the Lake Tahoe community), is another example of using community resources to deliver psychosocial health services to patients with cancer. In this case, 9 Personal communication, Moira A. Mulhern, PhD, CEO of Turning Point, March 15, 2007.

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22 CANCER CARE FOR THE WHOLE PATIENT a major source of resources is the community’s 30-bed hospital, Tahoe Forest Hospital. A relocated oncologist and Tahoe Forest Hospital created a solo physician ambulatory oncology practice that routinely incorporates attention to psychosocial health needs as part of oncology care. The solo oncologist uses hospital personnel to help address psychosocial needs of patients. TFCC’s multidisciplinary staff of oncology nurses, social workers, physical therapists, and others are employees of the hospital (which also owns the free-standing ambulatory oncology office). Through these staff (who also work at the hospital), TFCC offers psychological services; social services; nutritional counseling; rehabilitation therapy; and support group meetings for cancer patients, family, and friends at the hospital’s local Cen- ter for Health and Sports Performance. TFCC also offers the Look Good . . . Feel Better Program® and provides or links to a variety of other pa- tient supports and resources on its website (http://www.tahoecancercenter. com). Patients with psychosocial needs are identified during office visits or weekly meetings of the entire team. (The center does not yet use a standard screening tool.) Physicians link patients to psychosocial services by checking off “psychosocial evaluation” on a disposition sheet after patient visits. The staff schedules an appointment with the social worker, who then provides the necessary linkages to the psychosocial team. Coordination of biomedi- cal and psychosocial care takes place at weekly team meetings. Follow-up is performed at these meetings and in the interim by TFCC nurses. Patients are supported in managing their cancer and its treatment in several ways. Each patient receiving chemotherapy spends 1 hour with a TFCC nurse for education about chemotherapy. In addition, patients receive custom- ized printouts from the American Society of Clinical Oncology’s (ASCO’s) People Living with Cancer that provide specific details regarding their disease and planned treatments. TFCC also solicits volunteers from the community to provide assistance and companionship to patients receiving chemotherapy and help with other patient needs. TFCC’s 250 patients are covered by a variety of insurers, including Medicare (18 percent), commer- cial insurance (61 percent), and Medicaid (19 percent); 2 percent pay out of pocket or are uninsured.10 Discussion This approach is feasible for many oncology providers because of sub- stantial growth in the number of providers of psychosocial health services 10 Personalcommunication. Laurence J. Heifetz, MD, Medical Director, Tahoe Forest Cancer Center, August 10, 13, and 28, 2007.

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22 IMPLEMENTING THE STANDARD OF CARE in many communities. According to the report, From Cancer Patient to Cancer Surior: Lost in Transition, “There is a wealth of cancer-related community support services available through voluntary organizations, many of them at no cost” (IOM and NRC, 2006:229). These services include, for example, nationwide programs of ACS, The Wellness Com- munity, Gilda’s Clubs, and other organizations that offer community-based services at many sites nationwide (some of these are summarized in Ta- bles 3-2 and 3-3 in Chapter 3). These services also include regional, state, and local programs, such as Cancer Action in Kansas City and Sunstone Cancer Support Centers in southern Arizona (see http://www.sunstone healing.org/index.htm). This approach does not require physical space or a large staff. It does, however, require that organizations making referrals to other providers do so effectively, and that the referring organization have strong follow-up procedures in place. Approach 3: Use of Remote Providers of Psychosocial Health Services When a clinical practice has few staff and limited resources and/or is located where there are few or no psychosocial health care resources, such as in rural or remote areas, the only way to provide psychosocial health services on a frequent and timely basis may be to link patients with remote providers through telephone or Internet access. The NCI report Patient Centered Communication in Cancer Care, for example, notes that “telephone help lines can be a useful source of information and emotional support for patients with cancer” (Epstein and Street, 2007:138), and indi- viduals with a recent cancer diagnosis, for example, often use NCI’s Can- cer Information Service to obtain information about cancer treatments in preparation for meeting with their clinician (Epstein and Street, 2007). Even practices that elect to deliver a wide variety of psychosocial health services directly may not by themselves be able to provide all of the services needed by every patient, and may still need to provide links to remote services. For example, despite the well-developed nature and breadth of services it provides, Moores Cancer Center refers many of its patients to CancerCare each month for educational programs and financial assistance. This alternative may also be preferred by some individuals, even when psychosocial health services are available in their communities. Those with rare cancers may wish to connect with others who have their type of cancer, but find that the rarity of their condition means that this is impossible within their community. Others may simply desire the convenience or anonymity of receiving psychosocial services via the telephone or the Internet in their own homes. Adolescents and young adults who use the Internet routinely for multiple purposes also may prefer this mode of communicating. Using remote resources to provide psychosocial health services to

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20 CANCER CARE FOR THE WHOLE PATIENT patients requires only that oncology providers have a mechanism for iden- tifying patients with psychosocial needs; knowledge of a few key organiza- tions providing a wide array of psychosocial health services to individuals with many different types of cancer (e.g., NCI’s Cancer Information Service, ACS, CancerCare, the Lance Armstrong Foundation, and The Wellness Community); a way to support patients in accessing these resources by telephone or Internet; and a process for follow-up to ensure that patients accessed the services and that the services met their psychosocial health needs. Following is a discussion of how an organization with limited in- ternal and local resources could address psychosocial needs following the model put forth in Chapter 4. This approach may not always be able to meet all psychosocial health needs; for example, some of the needed ser- vices, such as assistance with activities of daily living and chores, may not be available remotely. Nonetheless, this should not prevent providers from directing patients to remote resources that can meet as many of their needs as possible. Implementation of the Use of Remote Resources Clinical practices with limited resources can set the stage for effective patient–provider communication and delivery of psychosocial health ser- vices by communicating with patients about psychosocial health services at the outset of care. This could be accomplished, for example, through a short “Letter to My Patients” given to all patients at their first visit.11 This letter could inform patients about the importance of communicating ef- fectively and the relevance of psychological and social issues to their health and health care. Box 5-1 contains a sample letter that oncology practices could adapt to their own characteristics—for example, the extent to which a practice uses a team approach to care. Practices could then use one of the low-tech approaches discussed in Chapter 4 that require few personnel and other resources to help identify patients with psychosocial health needs. The National Comprehensive Can- cer Network’s (NCCN’s) Distress Thermometer, for example is a one-page screening tool, publicly available at no cost, that can be self-administered in less than a minute. This tool could be duplicated using an office copy machine and presented by clinical or administrative staff to all patients each time they come in for a visit along with other routine paperwork, such as insurance forms. When completed, the screening tool could be attached to the patient’s chart and reviewed by the clinician together with the patient during the visit. To the extent that a clinician’s evaluation of psychological 11 Thisletter could also be used by clinical practices with greater internal and community resources.

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21 IMPLEMENTING THE STANDARD OF CARE BOX 5-1 A Letter to My Patients Dear Partner in Care, As we work together to treat your cancer, I will work very hard to give you the best health care for your cancer. As I do this, I will need your help in two impor- tant ways. First, you and I will need to talk with each other as clearly as we can. Medical words can be hard to understand, and this office can be very busy, but you and the people important to you need to understand your illness, its treatment, and all their effects. If I or my staff don’t explain things well enough or listen well enough, please tell us. We also need you to tell us what is on your mind. For example, what questions do you have? How much information do you want to know? What is important to you as you decide about different treatments for your cancer? COMMUNICATING WELL IS IMPORTANT TO YOUR CARE! Second, emotional worries and problems that might not seem related to your health care actually are. Having worries, fears, or other emotional problems can make you feel more tired, have more pain, sleep more poorly, and get in the way of good health care—all of which affect your heath. Your health is also affected by problems such as not being able to pay for medications; not having a phone, transportation, or health insurance; or not being able to work. At every visit, we will ask you to check off a list of any emotional or other problems you may be having. Although we may not be able to solve all of these problems ourselves, we know organizations that can help with many of them—and these are often just a toll-free phone call away. PAYING ATTENTION TO YOUR EMOTIONAL AND SOCIAL NEEDS IS PART OF HEALTH CARE TOO! Please let me or other members of our health care team know if you have any questions. We want to give you the best health care possible! and social problems added substantial time to the visit, the clinician could bill at a higher rate if reimbursed on a fee-for-service basis (see Chapter 6), although there is some evidence that use of a screening tool could reduce visit length (Pruyn et al., 2004). All practices should be able to provide at least some of the psychosocial health services needed by patients—for example, information about the patient’s diagnosis and treatment options, emotional support, and help in managing some of the symptoms of the illness and side effects of treatment.

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22 CANCER CARE FOR THE WHOLE PATIENT For those psychosocial health service needs that exceed the practice’s capa- bilities (e.g., material or logistical resources or peer support), the practice could have available a one-page handout listing organizations that can provide key psychosocial health services and can be accessed using a toll- free phone number. An example of such a patient handout is provided in Box 5-2. This handout could be adapted to include other resources, espe- cially those locally available. The reverse side could include a broader list of resources for those who are comfortable with and have easy access to the Internet. Follow-up with patients to check on their receipt of psychosocial health services and the effectiveness of the services could be accomplished either by checking with the patient at the next visit through the repeated use of the original screening tool, by monitoring between visits through telephone calls by office staff, or by asking patients or their caregivers to inform the practice if their psychosocial health care needs are not being met. Remote Resources As shown in Tables 3-2 and 3-3 in Chapter 3, a substantial number of nonprofit organizations provide psychosocial health services at no cost to patients via toll free phone lines, interactive Internet sites, or e-mail inquiry and response services. Virtual communities providing emotional support, information, and sometimes other psychosocial health services also are now commonplace. Their services are available to many cancer patients as a result of such Internet-based initiatives as those of PlanetCancer (http:// www.planetcancer.org/html/index.php), which serves young adults, and The Wellness Community (http://www.thewellnesscommunity.org), which offers professionally led Internet support groups and educational programs to adults with all types of cancers via the Internet, in addition to its 21 Wellness Communities and 28 satellite centers at physical locations across the United States. As of June 30, 2006, 1,103 people were participating in the Wellness Community’s 11 online support groups, 7 tumor-specific and mixed-diagnosis groups, 3 caregiver groups, 1 bereavement group, 1 teen group, and 1 Spanish-language group. Another remote resource is the telephone education workshops pro- vided by CancerCare for cancer patients, caregivers, and other interested persons. Approximately 2,000 people from the United States and countries such as Australia, Canada, China, Spain, and the United Kingdom attended each of three such workshops held in the first half of 2007. The utility of the workshops is indicated by the comments of those in attendance (see Box 5-3). CHESS (Comprehensive Health Enhancement Support System) is another Internet-based resource that can provide remote information,

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2 IMPLEMENTING THE STANDARD OF CARE BOX 5-2 Example of Patient Handout on Sources of Help in Managing Cancer and Its Treatment If you need more information about your cancer and its treatment, you can call: The National Cancer Institute. Information specialists can answer many questions about cancer, including most recent treatment advances. By telephone Monday through Friday, 9:00 AM to 4:30 PM within all time zones across the United States: 1-800-4-CANCER (1-800-422-6237) and 1-800-332- 8615 (TTY for the hearing impaired) (both toll free) Service in English and Spanish Questions can also be sent via e-mail to: cancergovstaff@mail.nih.gov A “live” help service is available to answer general questions about cancer and provide help in navigating the NCI website at https://cissecure@nci.nih. gov/livehelp/welcome.asp# The American Cancer Society By telephone 24 hours a day, every day: 1-800-ACS-2345 and 1-866-228- 4327 (TTY for the hearing impaired) (both toll free) By the Internet at: http://www.cancer.org/asp/contactUs/cus_global.asp If you need practical help, such as finding wigs or transportation or assis- tance with financial problems, you can call: The American Cancer Society (same as above) CancerCare By telephone Monday through Thursday, 9:00 AM to 7:00 PM Eastern Stan- dard Time, and Friday, 9:00 AM to 5:00 PM Eastern Standard Time (no week- end phone service): 1-800-813-HOPE (1-800-813-4673) (toll free) By the Internet at: http://www.cancercare.org If you would like to talk to someone about your concerns about having cancer or other concerns or talk with others who are living with cancer, you can call: The American Cancer Society (same as above) CancerCare (same as above) emotional support, and decision-making and problem-solving assistance to people with cancer and other chronic illnesses (e.g., asthma, HIV, heart dis- ease) and caregivers of persons with memory disorders and dementia. The design of the program is based on the results of literature reviews, needs as- sessment surveys typically involving several hundred patients and families,

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2 CANCER CARE FOR THE WHOLE PATIENT BOX 5-3 Patient Comments on the Usefulness of CancerCare’s Telephone Education Workshops My husband and I got a lot of good information from this workshop—very good advice at a difficult time for us. These programs are so helpful. Living in a rural area we don’t always have the resources nearby. Thank you for helping me to understand the aftermath of my treatment, what to look forward to and how to manage it. What a fabulous way to reach people who, like me, are in remote areas and have limited access to support. This forum provides a much-needed service. Thank you for your teleconferences. It keeps us in rural areas up on the latest. I can’t thank you enough for making these available via telephone for those of us in treatment or unable to travel. Of course my own oncologist can’t spend an hour talking with me. I feel so blessed that [these calls] provide me with top experts and up-to-the-minute information. The topic was one I haven’t seen presented anywhere else. It was very easy to call in and take part in the conference. I’m glad I did and I’m looking forward to the next one. Thank you!!! When my aunt suffered breast cancer 20 years ago, she had to go it alone because she was too sick to get to support groups. I not only have email, but your teleconferences and the ability to refer to the podcast again to review points I may have missed. Thank you for taking advantage of technology for my benefit. I actually listened via cell phone, while on vacation, sitting on the veranda of a grand old lodge, on one of Georgia’s beautiful barrier islands, overlooking a won- derful marshy waterway that leads to the Atlantic. It was the best way I’ve ever found to deal with cancer issues! The call-in portion was also very instructive given the fact that my wife and I have many of the same questions. After the discussion on “rocker” sole shoes, we found a location last Saturday and purchased a pair that is already giving me some needed comfort. I can even participate in a conference during lunch or when I’m traveling. It’s in- credibly versatile and educational, useful and extremely helpful. Keep these workshops coming. The more we know, the more able we are to judge if we are getting good and up-to-date care out here in rural areas. I love these programs. They keep me up-to-date and I can go back to my doctor and we talk about all I have learned and I feel very in the know. Thank you for offering these sessions and for offering them free of charge. They really do help survivors and offer a huge community service. Thank you for also offering the listening session after the workshop so those that miss the session can still hear the information. SOURCE: CancerCare, 2007.

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2 IMPLEMENTING THE STANDARD OF CARE focus groups and interviews, and an ongoing demonstration. Because it ad- dresses multiple conditions, the program can serve as a “one stop” resource for individuals who have other illnesses in addition to cancer. CHESS services are accessed through home-based computers (organiza- tions using the program often lend computers to patients who do not have them). As an example, information services for prostate cancer include brief answers to 400 frequently asked questions, links to more than 200 articles from the scientific and popular press, and WebLinks to connect users to other high-quality websites specific to the illness. A resource di- rector also identifies local and national services and ways to connect with them. For emotional support, CHESS offers patients and families bulletin board–style discussion groups, each of which is limited to 50 participants and is professionally facilitated. Ask an Expert provides confidential re- sponses to questions via NCI’s cancer information service. Personal stories written by professional writers who interview people with cancer, as well as videos, show how individuals have managed problems frequently identi- fied through needs assessments. Analysis, assessment, and decision-support services help patients think through issues important to them and make be- havior changes. A health-tracking program collects data on an individual’s health status every 2 weeks and charts change over time. The design of CHESS accommodates various coping and information-seeking styles by tailoring information and support to users’ interests. A team of decision, medical, information, and communication experts designs the decision-making and health-tracking tools. All CHESS modules are pilot-tested, then further refined on the basis of patient and clinician feedback before being released for dissemination. Modules are updated regularly to ensure that their content is accurate, relevant, and current and to improve their ease of use. All information is reviewed and updated (if needed) annually by advisory panels that include a range of professionals and patients. Intra-CHESS links and links to external websites also are checked biweekly. Patient feedback is actively solicited to identify voids in information and guide the development of system enhancements. Clinicians at participating research sites are encouraged to provide ideas for how CHESS can be adapted to better meet their needs. In addition, health care organizations are urged to review the content of modules before using them with their patients. Suggestions, questions, or feedback on the program content can be e-mailed to CHESS. CHESS has been studied extensively across multiple illnesses, including cancer, and in a number of different ways, ranging from randomized trials and field tests designed to assess its impact on quality of life (Pingree et al., 1996; Gustafson et al., 1999; Shaw et al., 2006) to evaluation of the cost and effectiveness of different methods for disseminating the CHESS systems (Gustafson et al., 2005a,b). Results of these studies show positive effects on

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2 CANCER CARE FOR THE WHOLE PATIENT multiple dimensions, including emotional well-being, functional well-being, competence in dealing with health information, participation in health care, and quality of life. Other important findings are that underserved popula- tions used CHESS more than socially advantaged populations and that they used it for different purposes. The former used the program more often to locate and analyze information and the latter more to participate in discus- sion groups (Gustafson et al., 2001, 2002). Formerly a demonstration program, CHESS is now an ongoing program with continued operation and updating provided by the University of Wis- consin Comprehensive Cancer Center. Oncology practices and individual patients desiring to use it can do so.12 The CHESS breast cancer program is available on the web in English and Spanish versions. The English ver- sion (Living with Breast Cancer) can be accessed at http://www.uwchessbc. org. The Spanish-language site, “Conviviendo con el Cancer de Seno,” is a cultural and linguistic translation of the existing online Living with Breast Cancer program. The translation was performed by a multinational team from Mexico, Argentina, and Venezuela with guidance from the Dane County Latino Health Council. Partners, including the National Latino Cancer Research Network and the Center for Patient Partnerships, provided additional Latina-specific content. Conviviendo con el Cancer de Seno can be accessed at http://www.chess.wisc.edu/espanol/.13 Discussion As useful as approaches such as The Wellness Community, CHESS, and other online and telephone services may be, there are some obstacles to their use. First, not all consumers may have access to the technology or the ability to use it in their homes, even if it is provided to them. Patients using entry-level computers with slow modems can be “timed out” by their Internet provider during a support session, causing an interruption in their participation. Second, it may not be possible to deliver all needed psycho- social health services on line. Delivery of mental health services over the Internet is still an evolving technology, and other services, such as cognitive testing, educational support, and support in performing activities of daily living, must still be provided directly. Nevertheless, telephone and Internet support can be used to provide some psychosocial health services, and clini- cians should not let an inability to ensure the provision of all such services prevent their taking action to ensure the provision of as many as possible. 12 By contacting 1-800-361-5481. 13 Personal communication, David Gustafson, University of Wisconsin-Madison, July 10, 2007, and Fiona McTavish, Deputy Director of CHESS, July 16, 2007.

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2 IMPLEMENTING THE STANDARD OF CARE RECOMMENDATIONS Based on the evidence presented in Chapters 3 and 4 and the additional evidence presented in this chapter on the feasibility of providing psycho- social health services in accordance with the standard recommended in Chapter 4, the committee makes the following recommendations. Recommendation: Health care providers. All cancer care providers should ensure that every cancer patient within their practice receives care that meets the standard for psychosocial health care. The National Cancer Institute should help cancer care providers implement the stan- dard of care by maintaining an up-to-date directory of psychosocial services available at no cost to individuals/families with cancer. In making this recommendation, the committee appreciates that patients diagnosed with cancer are treated for their illness by many different types of providers—some specializing in oncology and others, such as primary care physicians and general surgeons, who have a patient population that is more heterogeneous with respect to diagnosis. Patients with cancer may make up a minority of patients seen by the latter clinicians. The committee believes that all providers should implement the above recommendation, but appreciates that those whose practices are not devoted to oncology may have other strategies, standards, and expectations placed on them by experts in the care of patients with other diseases. While the committee believes that the standard of psychosocial health care has applicability to all chronic diseases (as illustrated by the breadth of clinical conditions ad- dressed by the models of care reviewed in Table 4-1 in Chapter 4), it calls upon oncology practices to lead the way in implementing this standard of care and providing cancer care “for the whole patient.” In making this recommendation, the committee also appreciates that there is not currently as ample a supply of psychosocial services as is nec- essary to meet all the needs of all patients, and some problems (such as a lack of health insurance and poverty) can be addressed only in a small way. Nevertheless, the committee urges all involved in the delivery of cancer care not to allow the perfect to be the enemy of the good. The inability to solve all psychosocial problems permanently should not preclude attempts to remedy as many as possible—a stance akin to treating cancer even when a successful outcome is not assured. Patient education and advocacy organi- zations can play a key role in bringing this about. Recommendation: Patient and family education. Patient education and advocacy organizations should educate patients with cancer and their family caregivers to expect, and request when necessary, cancer

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2 CANCER CARE FOR THE WHOLE PATIENT care that meets the standard for psychosocial care. These organizations should also continue their work on strengthening the patient side of the patient–provider partnership. The goals should be to enable patients to participate actively in their care by providing tools and training in how to obtain information, make decisions, solve problems, and com- municate more effectively with their health care providers. Finally, the organizational, financial, and size differences among cancer care practices may influence the strategies providers use to implement the standard of care. For example, the economics of collocation and care coor- dination is affected by the volume of cases. Local resources also influence the way in which care is organized. The committee concluded that evidence is sufficient to establish a stan- dard for the delivery of psychosocial health care to patients with cancer. At the same time, as discussed in Chapter 4, much of the research under- pinning this recommendation comes from populations with diseases other than cancer, and evidence in support of the individual components of the model is of variable strength. Thus a large-scale, systematic program dem- onstrating and evaluating the effects of the implementation of the standard of psychosocial health care at various oncology sites (e.g., comprehensive cancer centers attached to medical centers, freestanding oncology practices, and smaller oncology practices located outside of urban areas) would pro- vide useful information about different ways to implement the standard as a whole and its individual components more efficiently in oncology practices and the impact of doing so. Demonstrating the model of care in general medical practices would provide additional valuable information. Patients with cancer may not constitute the majority of the patients of such practices, and a demonstration could address how these practices could implement the standard of psychosocial care. For example, would such a practice adopt the standard only for patients with cancer, for patients with other complex conditions as well, or for all patients? Such a demonstration program would allow the model to be honed over time and generate ad- ditional examples of how it can be implemented efficiently and effectively. Moreover, measuring such outcomes as reductions in unmet needs and levels of distress, adherence to treatments, and cost-effectiveness would make it possible to compare different approaches to implementing the standard. A demonstration also could document effects of and approaches for successful implementation of the standard among vulnerable groups, such as those with low socioeconomic status, ethnic minorities, those with low health literacy, older adults, and the socially isolated. In addition, such a demonstration could examine different models of reimbursement, reveal additional ways of implementing the standard in resource-rich and non- resource-rich environments, and test the feasibility and soundness of perfor-

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2 IMPLEMENTING THE STANDARD OF CARE mance measures for psychosocial health care. The demonstration could also examine how various types of personnel can be used to perform specific types of interventions and how those personnel can best be trained. Recommendation: Support for dissemination and uptake. The Na- tional Cancer Institute, the Centers for Medicare & Medicaid Services (CMS), and the Agency for Healthcare Research and Quality (AHRQ) should, individually or collectively, conduct a large-scale demonstra- tion and evaluation of various approaches to the efficient provision of psychosocial health care in accordance with the standard of care. This program should demonstrate how the standard can be implemented in different settings, with different populations, and with varying person- nel and organizational arrangements. REFERENCES AAMC Center for Workforce Studies. 2007. Forecasting the supply of and demand for oncologists: A report to the American Society of Clinical Oncology (ASCO) from the AAMC Center for Workforce Studies. http://www.asco.org/ASCO/Downloads/ Cancer%20Research/Oncology%20Workforce%20Report%20FINAL.pdf (accessed August 15, 2007). Adkins, B., T. Titus-Howard, V. Massey, N. Washburn, J. Molinaro, B. Lange, W. L. Bruning, S. Simmons, P. Gerken, V. Sommer, K. LaNoue, B. Rogers, and B. Wilson. 2005. Recog- nizing depression in cancer outpatients. Community Oncology 2(6):528–533. CancerCare. 2007. CancerCare Connect™ telephone education workshop: Report to the National Cancer Institute and Lance Armstrong Foundation unpublished data. New York: CancerCare. Epstein, R. M., and R. L. Street. 2007. Patient-centered communication in cancer care: Pro- moting healing and reducing suffering. Bethesda, MD: National Cancer Institute. Friedman, D. L., D. R. Freyer, and G. A. Levitt. 2006. Models of care for survivors of child- hood cancer. Pediatric Blood & Cancer 46(2):159–168. Friedmann, P., T. D’Aunno, L. Jin, and J. Alexander. 2000. Medical and psychosocial services in drug abuse treatment: Do stronger linkages promote client utilization? HSR: Health Serices Research 35(2):443–465. Gustafson, D. H., R. Hawkins, E. Boberg, S. Pingree, R. E. Serlin, F. Graziano, and C. L. Chan. 1999. Impact of a patient-centered, computer-based health information/support system. American Journal of Preentie Medicine 16(1):1–9. Gustafson, D. H., R. Hawkins, S. Pingree, F. McTavish, N. K. Arora, J. Mendenhall, D. F. Cella, R. C. Serlin, F. M. Apantaku, J. Stewart, and A. Sainer. 2001. Effect of computer support on younger women with breast cancer. Journal of General Internal Medicine 16(7):435–445. Gustafson, D. H., R. P. Hawkins, E. W. Boberg, F. McTavish, B. Owens, M. Wise, H. Berhe, and S. Pingree. 2002. CHESS: 10 years of research and development in consumer health informatics for broad populations, including the underserved. International Journal of Medical Informatics 65(3):169–177.

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20 CANCER CARE FOR THE WHOLE PATIENT Gustafson, D. H., F. McTavish, W. Stengle, D. Ballard, E. Jones, K. Julèsberg, H. McDowell, W. C. Chen, K. Volrathongchai, and G. Landucci. 2005a. Use and impact of ehealth system by low-income women with breast cancer. Journal of Health Communication 10(Supplement 1):157–172. Gustafson, D. H., F. M. McTavish, W. Stengle, D. Ballard, E. Jones, K. Julèsberg, H. McDowell, G. Landucci, and R. Hawkins. 2005b. Reducing the digital divide for low-income women with breast cancer: A feasibility study of a population based intervention. Journal of Health Communication 10(Supplement 1):173–193. IOM (Institute of Medicine). 2004. Keeping patients safe: Transforming the work enironment of nurses. A. E. K. Page, ed. Washington, DC: The National Academies Press. IOM and NRC (National Research Council). 2006. From cancer patient to cancer surior: Lost in transition. M. Hewitt, S. Greenfield, and E. Stovall, eds. Washington, DC: The National Academies Press. Pincus, H. A. 2003. The future of behavioral health and primary care: Drowning in the main- stream or left on the bank? Psychosomatics 44(1):1–11. Pingree, S., R. Hawkins, D. Gustafson, E. Boberg, and E. Bricker. 1996. Can the disadvantaged ride the information highway? Hopeful lessons from a computer assisted crisis support system. Journal of Broadcasting and Electronic Media 40:331–353. Pruyn, J. F. A., H. A. G. Heule-Dieleman, P. P. Knegt, F. R. Mosterd, M. A. G. van Hest, H. A. M. Sinnige, A. T. H. Pruyn, and M. F. de Boer. 2004. On the enhancement of efficiency in care for cancer patients in outpatient clinics: An instrument to accelerate psychosocial screening and referral. Patient Education and Counseling 53(2):135–140. Shaw, B., D. Gustafson, R. Hawkins, F. McTavish, H. McDowell, S. Pingree, and D. Ballard. 2006. How underserved breast cancer patients use and benefit from ehealth pro- grams: Implications for closing the digital divide. American Behaioral Scientist 49(6): 823–834.