Rehabilitation

Resources Within

the Team and Community

Sue L. Frymark

I

T IS BECOMING widely known that more individuals are surviving cancer and even more have extended lives due to earlier diagnosis and expanded treatment options. One woman said “I knew I could die of cancer, what I neededto learn was that I could live with it. ” The purpose of cancer rehabilitation teams is just that-helping people to learn to live with cancer with a maximized level of independencephysically and emotionally. The resources of a cancer rehabilitation team can provide the support, skills, and information neededwhether the individuals life expectancy is short or long. They can compliment the acute care staff; together providing an early and comprehensive team approach to enhancing survival for the individual with cancer. THE REHABILITATION

TEAM

Cancer rehabilitation is defined as an interdisciplinary team approachto helping patients and families maximize their level of independencephysically, emotionally, socially, and spiritually within the limitations of the disease.’ A rehabilitation team comprised of various health professionals is the best way to assistthe individual with cancer in learning to adapt and live with limitations that may be temporary or permanent.233One individual may have to learn energy conservation techniques and how to modify their work setting; to adjust to decreased energy and strength for a few months while on chemotherapy. However, another individual may need to learn how to adapt to permanent changesdue to amputation from a diagnosis of sarcoma.In both cases,a rehabilitation teamhas the resourcesto help. However, a number of professionalsworking together does not insure a team From the Comprehensive Cancer Program, Good Samaritan Hospital and Medical Center, Portland, OR. Sue L. Frymark, BS, RN: Assistant Program Director, Comprehensive Cancer Program, Good Samaritan Hospital and Medical Center. Address reprint requests to Sue L. Frymark, BS, RN, Assistant Program Director, Comprehensive Cancer Program, Good Samaritan Hospital and Medical Center, 1015 NW 22nd Ave, Portland, OR 97210. Copyright 0 1992 by W.B. Saunders Company 0749-2081/92/0803-00#8$5.0000/0

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approach.Sometimesone’s enthusiasmto improve the care of those with cancerby working as a team is followed by disillusionment. The cohesiveness is not there. Cohesivenessis the degree to which individuals desire to remain in the group. Numerous factors such as a strong knowledge base, leadership, coordination, role blending, support, and trust are necessaryfor team effectiveness. Identifying the team membersand the expertise neededis the first step in developing a cancer rehabilitation team (Table 1). The resourceswithin the team will vary according to what is available and appropriate for the care setting. Various regions of the country will differ in availability of somedisciplines and the specific scopeof practice. To have the cohesiveness,it is important that the team memberwant to be part of a team and want to be involved in cancer care. TEAM PROCESS

Becausecancer rehabilitation blends rehabilitation care into oncology care, the team needs a broad as well as specific base of knowledge. Although eachteam memberbrings his or her unique body of knowledge based on one’s professional specialty, there is a common body of knowledge that preparesand orients eachteam memberto this particular population (Table 2). This backgroundis necessary for team members to understand how and when to intervene in a manner that is relevant to the medical situation as well as sensitive to the emotional status of the individual and family. A physical therapist must be aware of the extent of metastaticdiseaseand any sites that may be orthopedically at risk to excessiveweight bearing when walking. Becausethis is a relatively new specialty for interdisciplinary teams, it is beneficial if the team memberscan incorporate the knowledge of cancer into their area of practice. The cancer team also needs to know the roles and resources of its own team members so that referrals among team members can be used. For example, a speechpathologist working with a patient who has swallowing difficulties may refer to the dietitian to identify nutritional foods of the correct texture and consistency to reduce swallowing and/or aspiration problems. Seminars in Oncology Nursing, Vol 8, No 3 (August). 1992: pp 212-218

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RESOURCES

Table 1. Cancer Rehabilitetion Nurse Assists with assessment, care planning, coordination of services. Provides emotional support and patienfffamily education relevant to medical and rehabilitation needs, eg, skin care and bowel and bladder needs. Contributes to and/or coordinates discharge planning needs and services between settings. Social worker Assists with assessment, social service/financial planning, coordination of community and team services. Provides emotional guidance and counseling. Contributes to and/or coordinates discharge planning needs and services between settings.

Team Members

Recreational therapist Addresses issue of diversion, munity resources, and stress ation Speech-language pathologist Addresses issue of speech, and swallowing skills. Enterostomal therapist Assists in the management and skin care needs. Chaplain Provides counseling, readings,

Rehabilitation

counselor

Assists with the assessment and coordination of rehabilitation Physical

care planning, services.

counseling,

therapist

Addresses issue of strength and endurance, range of motion, ambulation skills, need for assistive devices, family training, lymphedema management, use of modalities for pain management. Occupational

therapist

Addresses issues of upper extremities, fine motor skills, activities of daily living, energy conservation, homemaking and work skills, need for assistive devices, family training, and cognitive and perceptual assessment. Dietitian

leisure skills, social and commanagement through relax-

language,

of teaching

chewing,

sucking,

of ostomy,

wound,

spiritual support and care which referrals, and religious traditions

may include of prayers,

and sacraments.

Psychologist/counselor Helps identify the emotional issues and coping skills needed particularly for those with complex family and personal histories. Pharmacist Serves as a resource to team, patient, and family medication uses, particularly symptom control.

regarding

Physiatrist Provides consultation regarding the chronic and rehabilitation needs; particularly issues related to bracing, splinting, and control of contractures and muscle spasms. Vocational rehabilitation counselor Addresses issues of returning to work education, and work place accommodation.

through

retraining,

Provides nutritional assessment, counseling, and planning including alternate routes of nutritional intake and use of supplements.

Volunteer Complements the team’s role by creating a pleasantiwarm atmosphere, a friendly sounding board, help with practical needs, and role model as a cancer survivor.

Although team members have very specific skills and areasof expertise, there will be a degree of overlap and role blending. Role blending can add flexibility to the team’s ability to respondto an individual’s need and offer reinforcement about another specific area of need. For example, physical therapists are concerned that individuals receive adequateprotein intake to reduce muscle fatigue and promote strength, whereas they may addressthe importance of this with the individual; the dietitian will instruct the individual as to how to do that. Communication is essential to providing efficient and timely services. The team coordinator can be the critical component to this process. As the coordinator works with the patient, family, physician, and acute care staff daily, he or she can relay information between the team memberssuch as new medical information, discharge informa-

tion, and family issues that may impact their services or modify the care plan. This is important so team members’ interventions are timely and medically relevant. Most cancer rehabilitation services have a weekly interdisciplinary patient care conferencethat provides a forum for all team members to review the care plan and note the patient’s progress. It assuresthat goals are uniform and realistic from each team member’s perspective.4This conference also enhances the opportunity for team membersto learn from one another. There are a variety of organizational models for the delivery of cancerrehabilitation services. They range from the simple use of resources and services to a highly integrated matrix model of care (Table 3). According to Ducanis and Golin,’ there are four barriers to team effectiveness: (1) goal conflicts, (2) organizational structure, (3) interprofessional conflict, and (4) lack of communication.

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SUE L. FRYMARK Table 2. Common Knowledge Base of Cancer Rehabilitation Team Emotional responses to cancer Coping styles Cancer pathophysiology Cancer treatment and side effects Family dynamics Symptom control

With all models, serious consideration needsto be given to theseissuesto maximize the cohesiveness and efficiency of the team. Whether a team is informally or formally organized, leadership is needed. Depending on the organization of the team, the authority and responsibility levels may vary. However, the team needs a spokespersonto advocate for the team and promote its role among the cancer care services. Internally, the leader needsto monitor the needsand effectivenessof the team. This requiresknowledge of each team member’s strengths and weaknesses and sensitivity to their emotional comfort and stresslevel as they work with cancer patients and their families. Health professionals have fears about cancer similar to those of the general public.6 Until a team member is well integrated into the team, there often is an emotional and profesTable 3. Organizational Models Rehabilitation

For the Delivery Services

of Cancer

Multidisciplinary oncology unit An inpatient unit in which a case manager or primary care nurse coordinates the services of other disciplines and resources This model needs identifiable specialists within the various disciplines who develop oncology as a special focus. Coordinator model This model involves the leadership of a nurse, social worker, or rehabilitation counselor who screens referrals and assesses needs of patients and families. Referral is then made to the appropriate resources. The patients may be in an inpatient unit or outpatient clinic. A rehabilitation unit Within a rehabilitation

unit, beds are designated

for those

individuals with cancer. The admission criteria for such a unit often limits the types and numbers of individuals who can be served. Cancer program based service This model involves an interdisciplinary team that is part of the cancer program. It usually involves coordinators who receive referrals from throughout the program and involves the appropriate team members as necessary. This is a highly integrated model with an entire team that specializes only in oncology.

sional adjustmentperiod. The team leader can facilitate this processthrough education, advocacy, and support. In addition, an interdisciplinary team needsa mission or philosophy statementthat provides not only direction but the environment that will foster independenceand a senseof control for the individual experiencing cancer. Providing rehabilitation services requires flexibility. In cancer, the rehabilitation processis continuous and the goals may be modified or changed frequently. One cannot always wait for the individual to be medically stable as other problems may arise such as a new metastatic site.7 The individual may be dischargedand therefore may continue therapy as an outpatient or at home. Endurance or time limitations may necessitatebedside care, and survival rather than rehabilitation may be a more predominateconcern of the individual. The rehabilitation processneedsnot only the skills of the professionals but their emotional commitment and patience as well8 IDENTIFIED REHABILITATION

NEEDS

Various studieshave identified the rehabilitation needs of individuals with all types and stagesof cancer. The scope and intensity of the needsmay vary between individuals but the categories are similar: emotional, functional, social, spiritual, and symptommanagement.A retrospectivereview of 272 inpatients identified the frequency of inpatient needsof cancer patients seenby the Rehabilitation Service (Table 4). It has been our experience that outpatient needs are similar; however, becausemedical and physical needsare more manageable,the individuals focus more on emotional, family, and social needs. Becauseof the frequency of emotional issues, the team should addressthe emotional needsof the patient and family first or simultaneously with the Table 4. Frequency of Inpatient Needs of Cancer Patients Seen by a Cancer Rehabilitation Service Needs Emotional/social Functional Symptom control Nutritional Bowel/bladder Skin care Other Reprinted

with permission9

Percentage IN = 272) 92 72 64 48 45 22 6

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RESOURCES

individual’s functional and social needs. In a study of cancer patient needs, Lehmann et al” reported that 97% of those studied identified emotional needs. Emotional responsesto cancer can include fear, loss of control, anger, denial, and mistrust. The goal of a rehabilitation team is to foster emotional and physical independence.It requires a sensitivity to the emotional status of the patient and the ability to discern when and how to intervene. Once a supportive rapport is established between the individual and the team member(s), the recommendations of the team may be more quickly accepted by the patient. Symptom managementissuesmust be addressed before functional needs. Unless a patient’s pain or nausea is reasonably controlled, it is difficult to perform ambulatory and self-care skills and the necessaryhome care needsfor dischargeplanning. This requires teamwork and communication between the acute care oncology staff and the rehabilitation therapists. Over 50% of patients with cancer will survive more than 5 years, thus the rehabilitation process must also prepare patients for long-term survival. Cancer rehabilitation teams that assist outpatients are becoming more aware of the long-term issues of those patients and the need for further research.” Most cancer patients initially concentrate on their medical treatment and prognosis. As patients with cancerstabilize or completetheir course of treatment, they begin to focus on the impact of the cancer. This correlates with Maslow’s hierarchy of needs: basic survival issues must be addressed first; then issues of self-esteem and belonging can be addressed.’Within support groups and networks, many patients begin to redefine their life “after” cancer. For some, life has a new value, purpose, or urgency. For others, there is a desire to focus on improving relationships. 12,i3 Returning to work or school and adjusting to permanentphysical changesor issuesof sexuality and intimacy often become the major issues in their lives. l4 REHABILITATION

ASSESSMENT

The involvement of team membersis dependent on the patient’s needs. One patient may only need the support and guidanceof a nurse, social worker, or psychologist while adapting emotionally to a cancer diagnosis. Another patient coping with ex-

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tensive functional limitations may need all the teams resourcesthat provide emotional, physical, social, and spiritual assistance.Therefore, assessment is critical to the appropriate uses of a rehabilitation service. Rehabilitation assessmentand coordination of servicesis usually done by a nurse, social worker, or a rehabilitation counselor familiar with the acute and rehabilitative aspectsof care.l5 This assessment may be global with a more detailed evaluation by the appropriate discipline on referral. For example, the nurse may identify limited mobility as a problem and then refer the patient to the physical therapist. The therapist evaluatesthe extent of the problem and recommendsthe treatmentplan. It has been noted that nurses often underestimate some of the needsof patients and families,16 thus it is important that patients and families are involved in the assessmentprocess.It is a continuous process to monitor progress and identify new issuesas they arise. Although cancermay be viewed as a chronic disease, the acute episodesof symptoms, treatment, and recurrence can pose new problems. There are various ways the assessmentprocess can be conducted from an informal approach to a structured interview. Using a written questionnaire as an assessmenttool can be an efficient and comprehensive method.17 However, this method is only accurate if the patient understands what is being asked. The patient’s health may also effect their ability to concentrateand complete the form, thus it is helpful to involve the family in the assessmentprocess. A second assessmentmethod is an informal interview that allows an open format and discussion of specific issues. The interviewer can encourage the individual to expressthose needshe or she may be hesitant to share (eg, anger, frustration, guilt). Often some of the greatest needs valued by the individual are not easily expressed and can be overlooked. This interview method allows the needs to be identified as well as the individual’s perceptionsof their severity and importance. However, the process is time intensive and the interviewer must be skilled and comfortable with some of the emotional responsesor reactions. Another assessmentmethod is a “structured interview” which involves a more focused discussion. The discussion focuseson issues relevant to the cancer, stage,treatments,age, social situation,

SUE L. FRYMARK

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support systems, etc. A tool can be used to direct the interview, but time should be allowed to discuss each item. ‘* A fourth assessmentmethod is a structured interview followed by a detailed assessmentof particular problems that are identified during the interview. The members of the rehabilitation team evaluate this information and develop a treatment plan. This team assessmentallows comprehensivenessand depth that one person cannot provide consistently. The comprehensivenessof assessingproblem areasis important. Frequently, one problem influencesanother and the severity of the problems may fluctuate. A thorough assessmentcan be emotionally difficult for the patient becauselimitations or problems are openly acknowledged.lg This necessitates the need for ongoing monitoring and evaluation, so appropriate rehabilitative services can be provided in a timely manner. The effectiveness of the rehabilitation process depends on the individual’s desire to participate. Many patients may be fearful of confronting their needs and becoming dependent and losing selfcontrol. Individuals need to acknowledge their needsso the rehabilitation processcan begin. The

rehabilitation care plan is developed according to the individual’s goals.20The patients identify their goals and the team provides the skills, knowledge, and support to help them reach their goals. COORDINATION

OF CARE

Once needs are identified and goals are established, a rehabilitation plan is developed. The intervention phaseof this plan is enhancedby a team coordinator who continues the monitoring and assessmentprocessbut also coordinatesthe inpatient and outpatient services (Fig 1). When a formal cancer rehabilitation service does not exist, this role may be filled by a clinical nurse specialist, a social worker, or rehabilitation counselor. It is important that cancerpatients be aware of a resourceperson so they can accessresourceswhen they are needed and desired. The more complex the individual’s needs, the more likely a cancer rehabilitation service should be involved. For example, patients with functional limitations, such as weaknessand limited self-care skills, a referral to the physical rehabilitation service is critical. Those patients having difficulty coping, especially those with complex family histories or limited financial

ChaplainI

Fig 1. A coordinated of cancer rehabilitation

model service.

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RESOURCES

and social resources, need referrals to mental health professionals and social service agencies. FUNDING ISSUES

Like all medical services, rehabilitation services experience changesin the reimbursementprocess. Physical rehabilitation servicesusually are covered by third-party carriers if they are propertly ordered and the therapist follows the current requirements for documentation. Reimbursement of outpatient services vary according to the insurance plan. Physical therapy tends to be reimbursed more easily than occupational therapy. Preauthorization of coverage, especially in the outpatient setting, is recommended. It also provides information as to the number of visits allowed. The reimbursement of enterostomal therapy, nutritional counseling, psychosocialcounseling, and social servicesvaries from one stateto another and from one reimbursement party to another. The requirements of who can deliver the services varies as well depending on the standardsof practice and licensure. A comprehensive cancer rehabilitation service, if centrally organized and administered, can be efficient and reasonablein cost. It also can use existing servicessuch as oncology social workers and clinical nurse specialists to avoid duplication of services. Individual team membersshould be used in patient care only as neededto reduce costs and assurereimbursement.The costsof the patient care coordinator is the primary expense. Although inpatient social workers and clinical specialists are not frequently reimbursed per patient, their role expeditesdischargesand efficient use of resources.

help groups and education, such as the American Cancer Society’s “I Can Cope Program.“s.” USING COMMUNITY

RESOURCES

Cancer patients with social and spiritual needs, as well as physical and emotional, require the resourcesnot only of the rehabilitation team but particularly of the community. The first choice includes those resourcesalready within the realm of the individual’s scope of living tie, clergy and church, senior center or neighborhood social services). However, some needs may involve legal, financial, and public assistance.Other community resourcesthat are frequently used are home health and hospice services. It is important for the cancer rehabilitation team to maintain an open working relationship with numerous agencies in order to enhancecontinuity of care. However, the chronically ill often neednonmedical community resourcessuch as the food bank or agency services. The number of community agencies and the frequent changesof their services is a major challenge for the cancerteam to maintain an accurate list of resources. It is often difficult for the patient to accessthe servicesso that frequently a health professional must serve as a liaison to facilitate access. The cancer team can assist by identifying the patient’s needs, searching for the most appropriate resource, initiate the referral, facilitate the initial contact, and evaluate the effectiveness of the referral. Part of the rehabilitation processis teaching individuals how to accessand use the resourcesthey need to stay independent.22 NATIONAL ORGANIZATIONS

ROLE OF SUPPORT GROUPS

Education and support group activities can enhance the rehabilitation process. These services may be facilitated by the acute care and/or the rehabilitation staff. These activities are a sourceof information and an opportunity for individuals with cancer to give as well as receive support. For somepatients it confirms that they are doing quite well; for others it may be an opportunity to gain a new perspective on their illness. Support groups provide an element of social acceptanceand enjoyment, and modified exercise groups provide support and fitness. The local American Cancer Society is frequently a sponsorof support and self

National organizations providing services for patients with cancer include the American Cancer Society, National Cancer Institute, and the National Coalition for Cancer Survivorship. The American CancerSociety’s resourcesare related to information, education, self-help and support groups, visitation programs by rehabilitation volunteers (Reach to Recovery), durable equipment, comfort items, lodging, and transportation. There is somevariance to the extent of services between local communities, but information, resources, and guidance can be obtained by calling l-800ACS-2345. The National Cancer Institute provides a toll-

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SUE L. FRVMARK

free information line (I-800-4-CANCER) and literature for patients undergoing treatment and coping with the impact of cancer. The National Coalition for Cancer Survivorship (301-585-2616) provides information about the long-term issuesof surviving cancer such as returning to work and long-term physiological changes. They promote these issues among legislative and health care groups. In addition, other groups such as the Leukemia Society of America, Inc., and the Association for Brian Tumor Researchfocus on specific populations with cancer. The Oncology Nursing Society Education Committee annually compiles and publishes a resource list of national organizations.23 CONCLUSION

The role of the cancer rehabilitation team does not end when patients complete their cancer treatment; rather it provides support and resourcesto prepare individuals for long-term survival. Survi-

vor support groups and clinics are being developed. Such services require the support of cancer rehabilitation services to address such issues as lymphedema, prosthetic adjustments, fear of recurrence, and employment. The National Coalition for Cancer Survivorship supports the following message: that there can be vibrant, productive life following the diagnosisof cancer;that millions of cancersurvivors share a common, transforming experience that has impacted their lives with new challengesand supportersrepresenta burgeoning constituency and powerful, positive force in society.”

The services of the cancer rehabilitation team must be provided to both inpatients and outpatients. The team can also be a resource to patients needingcommunity resources.The goal is to strive for a quality of life that is both functional and meaningful for patients with cancer.

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13. NorthousePG, NorthouseLL: Communication and cancer: Issuesconfronting patients, health professionals,and family members. J PsychosocOncol 5:17-46, 1987 14. Cella DF, Lesko LM: Cancersurvivors: Watch for signs of stresseven years later. Prim Care Cancer 8:1-9, 1988 15. RomsaasEP, McCormick JM: Assessmentand resource utilization for cancerpatients. Arch Phys Med Rehabil 67:459462, 1986 16. Arenth LM, Mamon JA: Determining patient needsafter discharge. Nurs Manage 16:20-24, 1985 17. RomsaasEP, Julian LM, Briggs AL, et al: A method for assessingthe rehabilitation needsof oncology outpatients. Onco1Nurs Forum 10:17-21, 1983 18. Welch D, Follo J, Nelson E: The development of a specialized nursing assessmenttool for cancer patients. Oncol Nurs Forum 9:37-44, 1982 19. Taylor CM, Crisler J: Concernsof personswith cancer as perceived by cancer patients, physicians, and rehabilitation counselors.J Rehabil 54:23-28, 1988 20. Dudas S, Carlson C: Cancer rehabilitation. Oncol Nurs Forum 15:183-188, 1988 21. Kudsk EG, Hoffman GS: Rehabilitation of the cancer patient. Prim Care 14:381-390, 1987 22. Lubkin IM (ed): Chronic Illness-Impact and Interventions. Boston, MA, Jonesand Bartlett, 1986 23. Education Committee: Cancer resourcesin the United States. Oncol Nurs Forum 18:1253-1256,1991 24. Laufman L, Voorhees S, Paugh A, et al: Cancer survivors: Is there a need for group support? Advances in Cancer Control: Cancer Control Researchand the Emergence of the Oncology Product Line, Liss, 1988, pp 233-241