Journal Club Article
Open Access Article

The Evolving Role of the Nurse During the Cancer Treatment Decision-Making Process: A Literature Review

Joseph D. Tariman

Katharine Szubski

shared decision making, cancer, patient participation, professional nursing role, decision aids
CJON 2015, 19(5), 548-556. DOI: 10.1188/15.CJON.548-556

Background: Many models of patient-physician relationships have been described since a paternalistic model was postulated in the early 1950s. Among them are the informative model, doctor-as-agent model, shared model of care, family-centered model, and Degner and Beaton’s Patterns of Decision Making.

Objectives: This article aims to examine the contemporary role of the nurse during the cancer treatment decision-making process.

Methods: This article reviews the current and evidence-based role of the nurse during cancer treatment decision making, and implications for practice and research are discussed.

Findings: Because of external forces, such as rising cost of health care, increasing healthcare consumerism, and increased emphasis on patient-centered care, the shared model of care is taking hold, particularly in the cancer setting. The evolution of these models has caused a shift in the dialogue related to cancer treatment decision making between patients and physicians, as well as oncology nurses. These events contribute to the evolving role of the nurse during the cancer treatment decision-making process.

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    From post-World War II through the early 1970s, the model of care for a patient-physician relationship was predominantly patriarchal (Feldmann, 1973; Planche, 1951). During this era, patients declined to become involved in selecting their own treatment, even when urged to do so by the physician. Patients essentially said, “It is up to you, doctor. You are the expert.” By the mid-1970s, paternalism became unpopular, and a shared model of care emerged (McKinstry, 1992; Medhat, Hassanein, & Beisecker, 1988). Experts suggested that the forces driving this change were the rising costs of health care (Ford, 1977; Lachner, 1970; Lalonde, 1977); a rise in healthcare consumerism in North America, Europe, and Australia (McDevitt, 1986; Price, 1981; Sparrow, 1978); and an increased emphasis on patient-centered care (Cohen & Naughton, 1995; Hardegg, 1976).

    Many models of patient-physician relationships have been described since a paternalistic model was postulated in the early 1950s (Planche, 1951). Among them are the informative model (Emanuel & Emanuel, 1992), doctor-as-agent model (Emanuel & Emanuel, 1992; McKinstry, 1992), shared model of care (Charles, Gafni, & Whelan, 1997, 1999), family-centered model (Freedman, Pierce, & Reiss, 1987), and Degner and Beaton’s Patterns of Decision Making (Degner & Russell, 1988). The evolution of these models also contributes to the evolving role of the nurse and nurse practitioner during cancer treatment decision making. This article reviews the current and evidence-based roles of the nurse during cancer treatment decision making, and implications for practice and research are discussed.

    Methods

    A systematic review of the literature was conducted in PubMed from 1945–2014. The search was conducted using the medical subject heading (MeSH) terms role of nurse, cancer, decision making, and treatment, yielding 186 articles. Searches in two other databases, CINAHL® Complete and PsycINFO, were also performed using the same search terms, yielding 22 and 15 articles, respectively. All titles and abstracts were reviewed, and full-text articles were obtained if they met the criterion that the article must include a description of the role of the nurse or nurse practitioners throughout the cancer treatment decision-making process. Thirty-two articles met the criterion for this review. Thirty-three articles were included in the review after reading the full text and after using the ancestry approach, an approach involving retrieval of articles found to be relevant to the review after the completion of the reviews of articles that have met the criteria. Figure 1 illustrates the results of the search process.

    Results

    Information Sharing to the Multidisciplinary Care Team

    The multidisciplinary team (MDT) approach has been adopted in several subspecialties in cancer care, including lung cancer (Leo, Venissac, Poudenx, Otto, & Mouroux, 2007), head and neck cancer (Stalfors, Lundberg, & Westin, 2007), colorectal cancer (Wood et al., 2008), and breast cancer (Jenkins, Fallowfield, & Poole, 2001). Nurses are integral members of the oncology MDT and participate in case discussions, share perspectives on pressing clinical issues facing the patients, and contribute to treatment decision making through MDT meetings. The MDT approach to care has been shown to improve cancer care outcomes, including improved survival (Kesson, Allardice, George, Burns, & Morrison, 2012).

    Lamb et al. (2014) reported that patients had positive experiences with an MDT working together. In this study, the researchers recommended that the role of the nurse in MDT decision making should be strengthened to improve the representation of patients’ interests. The nurse is in an excellent position to gather information related to patients’ preferences for treatment and improve the quality of decision making in MDT meetings (Kidger, Murdoch, Donovan, & Blazeby, 2009). In a study by Muller-Juge et al. (2013), researchers found that medical residents on an internal medicine ward wanted more active participation from nurses during the clinical decision-making process. Medical residents wanted nurses to have a deeper understanding of the patient’s clinical situation, anticipate problems, verify medical decisions, and exchange more information. Information sharing with physicians was a major nurse’s role during end-of-life decision making identified by de Veer, Francke, and Poortvliet (2008).

    Information Giving to Patients and Families

    Information giving has been an essential part of the nurse’s role in clinical practice. In a qualitative study of influences on the treatment decisions made by patients with advanced lung cancer, researchers have identified the clinical nurse as a trusted source of information (Thornton, Parry, Gill, Mead, & Macbeth, 2011). Another study also supported the nurse’s role of information giving to patients related to various types of therapy and tests (Jenkins et al., 2001). A study on treatment decision making in 20 older adults diagnosed with symptomatic myeloma, patients identified nurses as one of the sources of information (Tariman, Doorenbos, Schepp, Becker, & Berry, 2014).

    In the palliative care setting, nurses are vital in providing information related to symptomatology and disease trajectory. Kennedy (2005) reported that nurses found it difficult to discern when to give devastating information to patients and families, and nurses shared that they have to balance clinical decision making based on the patient and family preferences and wishes. Patient information giving by nurses is well studied in the population of patients with cancer. A systematic review of 30 published studies on the priority of information needs for patients with cancer revealed that the top three patient information needs were related to prognosis, diagnosis, and treatment, and that nurses play a major role in the provision of disease- and treatment-related information (Tariman, Doorenbos, Schepp, Singhal, & Berry, 2014). Nurses were among the trusted sources of information by patients and their caregivers (Kennedy, 2005; Tariman, Doorenbos, Schepp, Becker, et al., 2014).

    Advocacy

    The nurse is the most trusted healthcare team member according to a Gallup survey (Newport, 2012). For this reason, nurses are in an excellent position to advocate for the patient’s right to autonomy and informed decision making. However, one challenging question constantly nags the nurse’s ethical core—what is the role of the nurse in futile treatment decisions? Many oncology nurses are faced with this common situation in which oncologists are allowed to override patient autonomy with physician autonomy. An ethnographic finding on physicians’ versus nurses’ views on patient autonomy revealed that physicians considered patient autonomy by emphasizing beneficence through treatment provision (Robertson, 1996). In a discourse with a patient vignette reflecting on a futile aggressive chemotherapy decision for myeloma therapy, Breier-Mackie (2001) suggested that nurses play a critical role in broaching a patient’s autonomy to the ethical discourse, as well as contributing significantly to the ethical discussions that must ensue in such cases. In contrast, Goodman (2003) suggested that, in difficult ethical-legal decision making, the voice of the nurse is absent, insinuating the possibility that nurses are silenced by professional boundaries, the legal framework, or by a lack of confidence. One study discovered that the role of the neonatal intensive care nurse in decision making involves advocacy, participation in ethical discussions, and communication with families and healthcare team members (Monterosso et al., 2005). Briggs and Colvin (2002) and Tee, Balmaceda, Granada, Fowler, and Payne (2013) found that, during end-of-life decision making, the nurse’s role is primarily that of patient advocacy regarding the decision of whether to pursue more therapies or to consider end-of-life care.

    Psychological Support

    Nurses provide essential psychological support to patients and families throughout the continuum of cancer care. For example, nurses provide psychological support during decision making for phase I trials by allowing patients to talk about what is important in their lives and searching for a way for the patients to live life until the end satisfactorily (Kohara & Inoue, 2010). During end-of-life care, nurses provide guidance, information, and support to patients and families during difficult decisions on artificial feeding (Bryon, Gastmans, & de Casterlé, 2008) and withholding life-supporting measures (Bouley, 2011). Nurses also provide emotional support to women following early breast cancer treatment to help them feel satisfied with their decisions and prevent psychological distress (Budden, Hayes, & Buettner, 2014). Listening to patients and being present during periods of decision uncertainties were among the psychological support roles identified in most studies mentioned previously.

    Complex Role

    Brownhill, Chang, Bidewell, and Johnson (2013) described the role of the community nurse during the decision-making process in bereavement care as a “complex role,” characterized by decision making that is discretionary and contingent on several variables in the context of uncertainty. A similar theme of complexity and the increasingly nursing role in decision making has been reported in the decision-making process of nurses when extubating patients following cardiac surgery (Hancock & Easen, 2006). Hancock and Easen (2006) found that many variables, including relationships, hierarchy, power, leadership, education, experience, and responsibility, have influenced the decision-making process of nurses.

    Symptom Assessment, Monitoring, and Management

    During the actual administration of chemotherapy, studies have shown that nurses are involved in symptom assessment, monitoring, and management, often using standardized checklists in adult patients with cancer (Williams et al., 2013; Williams, Lantican, Bader, & Lerma, 2014; Williams, Williams, LaFaver-Roling, Johnson, & Williams, 2011), as well as in children with cancer (Williams et al., 2012). One large, randomized study also identified this role through the use of a well-designed homecare nursing program outlining the specific nursing actions that relate to symptom assessment and management (Molassiotis et al., 2009). Similarly, McMillan and Small (2007) also demonstrated this important nursing role with the use of the COPE (Caring, Optimism, Planning, and Expert information) intervention, designed to address the specific needs of families caring for patients with cancer at home, for patients receiving hospice care.

    Outcome Evaluation

    Nurses have been involved in outcome evaluation initiatives because of popularity of evidence-based practice. One study demonstrated that nurses were able to develop, implement, and evaluate the effectiveness of a nurse-led risk assessment tool for the reduction of febrile neutropenia in hospitalized patients with cancer receiving chemotherapy (O’Brien, Dempsey, & Kennedy, 2014). Advanced practice nurses are also involved in outcome evaluation to examine the efficacy and cost-benefit analysis of undertreating the side effects of chemotherapy, such as nausea and vomiting (Viale, Grande, & Moore, 2012).

    Based on the various roles of the nurse during the cancer treatment decision-making process identified in this literature review, the authors proposed a model to reflect the evolving roles (see Figure 2). The model shows the evolving role of the nurse from earlier roles of patient education and advocacy to the most recent roles in symptom assessment, monitoring, and management and outcome evaluation. The complex role is in the middle of the model to reflect the central theme that the nurse’s role during cancer treatment decision making is multifaceted, and the nurse responds to the needs of the patient depending on contingent variables. Table 1 summarizes all articles included in this literature review. Levels of evidence for nursing studies are based on Melnyk and Fineout-Overholt’s (2011) hierarchy of evidence.

    Discussion and Implications for Practice

    One of the competencies outlined by the American Association of Colleges of Nursing ([AACN], 2008, 2010a, 2010b, 2012) for nurses with various educational levels (baccalaureate to doctorate) is to provide appropriate health information to patients, families, caregivers, and the community. Advocacy for patients, as guided by the ethical principles of nursing practice, is also a role that nurses perform in clinical practice. This review of the literature clearly demonstrates that patient education and advocacy roles are widely observed in practice. However, nursing role discrepancies have been documented in the literature, particularly in the areas of organizational decision making and in the provision of patient education (Takase, Maude, & Manias, 2006a, 2006b). A study on intensive care nurses’ involvement in end-of-life decision-making processes found that the relatives of patients wanted more involvement from nurses (Lind, Lorem, Nortvedt, & Hevroy, 2012).

    Nurses must strive to achieve role actualization (actual performance of expected and desired role) to provide a comprehensive patient education and advocate for people with cancer, particularly during periods of decision uncertainty. Berry et al. (2013) developed an Internet-based intervention for newly diagnosed patients with prostate cancer called the Personal Patient Profile–Prostate, which addresses decision uncertainty and facilitates selection of cancer therapies that is congruent with a patient’s personal values and preferences.

    In advanced practice nursing, the role of the acute care nurse practitioner during decision making is highly sensitive to context and largely dependent on the laws regulating the scope of nurse practitioner practice, as well as healthcare system–level policies that are under the control of medical and nursing leadership (Kilpatrick, 2013). Nurse practitioners must continue to be cognizant of organizational policies and professional bylaws to practice within the scope of legal, professional, and organizational limits. In addition, nurse practitioners must proactively address the barriers to full actualization of nurse practitioner role related to cancer treatment decision making. Nursing administrators and nurse leaders must shape policies and procedures geared toward the full role actualization related to cancer treatment decision making.

    Nurses must have full awareness of their professional role during cancer treatment decision making, understand and resolve the barriers to full actualization of their role, use evidence-based interventions that can decrease patients’ decision uncertainty, and continue to work on improving clinical outcomes related to cancer treatment decision making.

    Implications for Research

    A paucity of nursing research exists related to the ideal versus actual role of nurses and nurse practitioners during cancer treatment decision making. Oncology nurses and nurse practitioners are often asked by patients, “If you were me, what treatment would you choose?” No right answer exists to this question because no one-size-fits-all approach to cancer treatment exists. Based on a literature review by Tariman, Berry, Cochrane, Doorenbos, and Schepp (2012), many factors could influence the actual cancer treatment decisions, including patient-specific, physician-specific, and contextual factors. An assumption that the nurse’s ability to provide patient education, give health information, and advocate on behalf of the patients may be influenced by professional education, years of training, and types of practice (Goodman, 2003; Hewitt, 2002). However, a more systematic study is still needed to test this assumption. One study on treatment decision making among patients with advanced cancer found that a need exists to clarify the specific role of nurses during the different stages of treatment decision making (McCullough, McKinlay, Barthow, Moss, & Wise, 2010). Similarly, a review on the role of the nurses in the clinical decision-making process also calls for more research studies that address the specific contributions of the nurses during clinical decision making, which can potentially lead to the improvement of healthcare outcomes (Campos & Graveto, 2009).

    Conclusions

    The authors of the current article believe that health care is now entrenched in the era of the shared decision-making model of practice, where patients are being asked or expected to participate in the cancer treatment decision-making process (Charles et al., 1999; Colella & DeLuca, 2004; Elwyn et al., 2012; Fenton, 2003; Kane, Halpern, Squiers, Treiman, & McCormack, 2014; Muller, 2012). The paternalistic model of care has faded in popularity (Feldmann, 1973; McKinstry, 1992; Medhat et al., 1988) and the shared decision-making model of care is taking hold, particularly in the cancer care setting (Lund, Jonler, Graversen, Borre, & Bro, 2013; Shad, Myers, & Hennessy, 2012; Tariman, Berry, Cochrane, Doorenbos, & Schepp, 2010). The Agency for Healthcare Research and Quality recognized the important role of nurses and nurse practitioners in providing patient education to engage patients and provide information about treatment options (Clancy, 2012). How nurses’ and nurse practitioners’ roles have evolved in response to this changing paradigm in the patient-physician relationship has not been previously investigated. Therefore, a study that focuses on examining the contemporary role of nurses and nurse practitioners during the cancer treatment decision-making process is needed.

    A large study in 17 European countries regarding physicians’ perceptions of nurse involvement in end-of-life decision making revealed geographic differences in the perceived level of participation, with more involvement noted in the northern European region (Benbenishty et al., 2006). Researchers from this study suggested that these geographic differences may be because of varying work cultures in different regions of Europe. Nurses working in the northern regions have more collegial relationships with physicians. Further investigation is needed to validate these findings, and additional investigation is warranted to explore factors or variables that are associated with higher level of participation of nurses during cancer treatment decision making.

     

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    Tariman, J.D., Berry, D.L., Cochrane, B., Doorenbos, A., & Schepp, K.G. (2012). Physician, patient, and contextual factors affecting treatment decisions in older adults with cancer and models of decision making: A literature review [Online exclusive]. Oncology Nursing Forum, 39, E70–E83. doi:10.1188/12.ONF.E70-E83

    Tariman, J.D., Doorenbos, A., Schepp, K.G., Becker, P., & Berry, D.L. (2014). Patient, physician and contextual factors are influential in the treatment decision making of older adults newly diagnosed with symptomatic myeloma. Cancer Treatment Communications, 2, 24–47. doi:10.1016/j.ctrc.2014.1008.1003.

    Tariman, J.D., Doorenbos, A., Schepp, K.G., Singhal, S., & Berry, D.L. (2014). Information needs priorities in patients diagnosed with cancer: A systematic review. Journal of the Advanced Practitioner in Oncology, 2014, 115–122.

    Tee, M.E., Balmaceda, G.Z., Granada, M.A., Fowler, C.S., & Payne, J.K. (2013). End-of-life decision making in hematopoietic stem cell transplantation recipients. Clinical Journal of Oncology Nursing, 17, 640–646. doi:10.1188/13.CJON.640-646.

    Thornton, M., Parry, M., Gill, P., Mead, D., & Macbeth, F. (2011). Hard choices: A qualitative study of influences on the treatment decisions made by advanced lung cancer patients. International Journal of Palliative Nursing, 17, 68–74.

    Viale, P.H., Grande, C., & Moore, S. (2012). Efficacy and cost: Avoiding undertreatment of chemotherapy-induced nausea and vomiting [Online exclusive]. Clinical Journal of Oncology Nursing, 16, E133–E141. doi:10.1188/12.CJON.E133-E141

    Williams, P.D., Graham, K.M., Storlie, D.L., Pedace, T.M., Haeflinger, K.V., Williams, D.D., . . . Williams, A.R. (2013). Therapy-related symptom checklist use during treatments at a cancer center. Cancer Nursing, 36, 245–254. doi:10.1097/NCC.0b013e3182595406

    Williams, P.D., Lantican, L.S., Bader, J.O., & Lerma, D. (2014). Symptom monitoring, alleviation, and self-care among Mexican Americans during cancer treatment. Clinical Journal of Oncology Nursing, 18, 547–554. doi:10.1188/14.CJON.547-554

    Williams, P.D., Williams, A.R., Kelly, K.P., Dobos, C., Gieseking, A., Connor, R., . . . Del Favero, D. (2012). A symptom checklist for children with cancer: The Therapy-Related Symptom Checklist–Children. Cancer Nursing, 35, 89–98.

    Williams, P.D., Williams, K., LaFaver-Roling, S., Johnson, R., & Williams, A.R. (2011). An intervention to manage patient-reported symptoms during cancer treatment. Clinical Journal of Oncology Nursing, 15, 253–258.

    Wood, J.J., Metcalfe, C., Paes, A., Sylvester, P., Durdey, P., Thomas, M.G., & Blazeby, J.M. (2008). An evaluation of treatment decisions at a colorectal cancer multi-disciplinary team. Colorectal Disease, 10, 769–772. doi:10.1111/j.1463-1318.2007.01464.x

    About the Author(s)

    Joseph D. Tariman, PhD, ANP-BC, is an assistant professor in the College of Science and Health at DePaul University and Katharine L. Szubski, RN, BSN, is a supervising clinical coordinator at Advocate Medical Group, both in Chicago, IL. The authors take full responsibility for the content of the article. Writing and editorial support was provided by Hannah Lee, MA, at DePaul University Center for Writing-Based Learning. The content of this article has been reviewed by independent peer reviewers to ensure that it is balanced, objective, and free from commercial bias. No financial relationships relevant to the content of this article have been disclosed by the independent peer reviewers or editorial staff. Tariman can be reached at phdinseattle@yahoo.com, with copy to editor at CJONEditor@ons.org. (Submitted September 2014. Revision submitted November 2014. Accepted for publication December 3, 2014.)

     

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    Williams, P.D., Lantican, L.S., Bader, J.O., & Lerma, D. (2014). Symptom monitoring, alleviation, and self-care among Mexican Americans during cancer treatment. Clinical Journal of Oncology Nursing, 18, 547–554. doi:10.1188/14.CJON.547-554
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