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March 17, 2018
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March 17, 2018

The practice of health care providers at all levels brings you into contact with people from a variety of faiths. This calls for knowledge and acceptance of a diversity of faith expressions.

The purpose of this paper is to complete a comparative ethical analysis of George’s situation and decision from the perspective of two worldviews or religions: Christianity and a second religion of your choosing. For the second faith, choose a faith that is unfamiliar to you. Examples of faiths to choose from include Sikh, Baha’i, Buddhism, Shintoism, etc.

In your comparative analysis, address all of the worldview questions in detail for Christianity and your selected faith. Refer to Chapter 2 of Called to Care for the list of questions. Once you have outlined the worldview of each religion, begin your ethical analysis from each perspective.

In a minimum of 1,500-2,000 words, provide an ethical analysis based upon the different belief systems, reinforcing major themes with insights gained from your research, and answering the following questions based on the research:

How would each religion interpret the nature of George’s malady and suffering? Is there a “why” to his disease and suffering? (i.e., is there a reason for why George is ill, beyond the reality of physical malady?)
In George’s analysis of his own life, how would each religion think about the value of his life as a person, and value of his life with ALS?
What sorts of values and considerations would each religion focus on in deliberating about whether or not George should opt for euthanasia?
Given the above, what options would be morally justified under each religion for George and why?
Finally, present and defend your own view.
Support your position by referencing at least three academic resources in addition to the course readings, lectures, the Bible, and the textbooks for each religion. Each religion must have a primary source included. A total of six references are required according to the specifications listed above. Incorporate the research into your writing in an appropriate, scholarly manner.

Prepare this assignment according to the guidelines found in the APA Style Guide,

This assignment uses a rubric. Please review the rubric prior to beginning the assignment to become familiar with the expectations for successful completion.

RUBRIC

1 Unsatisfactory 0.00%

2 Less Than Satisfactory 65.00%

3 Satisfactory 75.00%

4 Good 85.00%

5 Excellent 100.00%

70.0 %Content

20.0 %Identification of Ethical Issues as They Relate to the Four Principles of Principlism

The ethical issues are incorrectly organized.

Ethical issues are adequately organized according to the four principles of principlism. Some of the categorization is suspect.

Ethical issues are organized according to the four principles of principlism.

Ethical issues are organized according to the four principles of principlism. A distinction between the four principles is clearly stated, but the reasoning of the categorization is merely adequate.

Ethical issues are organized according to the four principles of principlism. A distinction between the four principles and the reasoning of the categorization is clearly stated.

20.0 %Description of the Christian Worldview and the Other Worldview

The description of the Christian worldview and the selected worldview address little to none of the seven worldview questions and the description is mostly incorrect or irrelevant.

The description of the Christian worldview and the selected worldview address most of the seven worldview questions with little evidence of a surface-level understanding.

The description of the Christian worldview and the selected worldview adequately address all seven worldview questions, but the description has a surface-level understanding.

The description of the Christian worldview and the selected worldview address all seven worldview questions with evidence of basic understanding utilizing a detailed description.

The description of the Christian worldview and the selected worldview address all seven worldview questions with evidence of a deep understanding utilizing a detailed description.

20.0 %Analysis of Ethical Issues through Christian Worldview and the Other Worldview

The primary principles and values in the decision making process of each worldview have little to no relevance. Ethical reasoning seems to have no connection from the worldview considerations.

The primary principles and values are acknowledged in the decision making process of each worldview. Ethical reasoning is loosely based from the worldview considerations.

The primary principles and values surface in the decision making process of each worldview. Ethical reasoning is implied from the worldview considerations.

The primary principles and values are recognized in the decision making process of each worldview. Ethical reasoning is explained from the worldview considerations. Most implications of the principles and values are given consideration.

The primary principles and values are clearly distinguished in the decision making process of each worldview. Ethical reasoning is clearly delineated from the worldview considerations. The implications of the principles and values are given complete consideration.

10.0 %Personal Recommendation

The personal recommendation from the student’s worldview is stated, but the justification has little to no relevance.

The personal recommendation from the student’s worldview is stated with proper justification.

The personal recommendation from the student’s worldview is stated with proper justification with some implications explained.

The personal recommendation from the student’s worldview is stated with proper justification. The primary principles of the student’s worldview are clearly described with most implications explained.

The personal recommendation from the student’s worldview is stated with proper justification. The primary principles of the student’s worldview are clearly described with all implications explained.

20.0 %Organization and Effectiveness

7.0 %Thesis Development and Purpose

Paper lacks any discernible overall purpose or organizing claim.

Thesis and/or main claim are insufficiently developed and/or vague; purpose is not clear.

Thesis and/or main claim are apparent and appropriate to purpose.

Thesis and/or main claim are clear and forecast the development of the paper. They are descriptive and reflective of the arguments and appropriate to the purpose.

Thesis and/or main claim are comprehensive. The essence of the paper is contained within the thesis. Thesis statement makes the purpose of the paper clear.

8.0 %Argument Logic and Construction

Statement of purpose is not justified by the conclusion. The conclusion does not support the claim made. Argument is incoherent and uses noncredible sources.

Sufficient justification of claims is lacking. Argument lacks consistent unity. There are obvious flaws in the logic. Some sources have questionable credibility.

Argument is orderly, but may have a few inconsistencies. The argument presents minimal justification of claims. Argument logically, but not thoroughly, supports the purpose. Sources used are credible. Introduction and conclusion bracket the thesis.

Argument shows logical progressions. Techniques of argumentation are evident. There is a smooth progression of claims from introduction to conclusion. Most sources are authoritative.

Clear and convincing argument presents a persuasive claim in a distinctive and compelling manner. All sources are authoritative.

5.0 %Mechanics of Writing (includes spelling, punctuation, grammar, language use)

Surface errors are pervasive enough that they impede communication of meaning. Inappropriate word choice and/or sentence construction are used.

Frequent and repetitive mechanical errors distract the reader. Inconsistencies in language choice (register) and/or word choice are present. Sentence structure is correct but not varied.

Some mechanical errors or typos are present, but are not overly distracting to the reader. Correct and varied sentence structure and audience-appropriate language are employed.

Prose is largely free of mechanical errors, although a few may be present. The writer uses a variety of effective sentence structures and figures of speech.

Writer is clearly in command of standard, written, academic English.

10.0 %Format

5.0 %Paper Format (use of appropriate style for the major and assignment)

Template is not used appropriately or documentation format is rarely followed correctly.

Appropriate template is used, but some elements are missing or mistaken. A lack of control with formatting is apparent.

Appropriate template is used. Formatting is correct, although some minor errors may be present.

Appropriate template is fully used. There are virtually no errors in formatting style.

All format elements are correct.

5.0 %Documentation of Sources (citations, footnotes, references, bibliography, etc., as appropriate to assignment and style)

Sources are not documented.

Documentation of sources is inconsistent and/or incorrect, as appropriate to assignment and style, with numerous formatting errors.

Sources are documented, as appropriate to assignment and style, although some formatting errors may be present.

Sources are documented, as appropriate to assignment and style, and format is mostly correct.

Sources are completely and correctly documented, as appropriate to assignment and style, and format is free of error.

100 %Total Weightage

Chapter 2 called to care list of questions:

Seven Basic Worldview Questions James Sire defines a worldview as “a commitment, a fundamental orientation of the heart, that can be expressed as a story or in a set of presuppositions (assumptions which may be true, partially true or entirely false) which we hold (consciously or subconsciously, consistently or inconsistently) about the basic constitution of reality, and that provides the foundation on which we live and move and have our being.”* He asserts that to understand the concept of worldview, we must answer the following questions:

•What is prime reality? •What is the nature of the world around us?•What is a human being?•What happens to a person at death?•Why is it possible to know anything at all?•How do we know what is right and wrong?•What is the meaning of human history?**

For the Christian nurse, the answers to these questions come from the stories, themes and patterns found in the Bible. This careful study of Scripture reveals to us the nature of persons, the context in which we live and practice, the meaning of health and the impetus for nursing care. For Christians, prime reality is God, who created and sustains all things. Thus, this worldview is derived from a Christian theology of nursing.
Clinical Journal of Oncology Nursing • Volume 19, Number 6 • Skills Training for Discussing End-of-Life Care 697

Nessa Coyle, PhD, APRN, FAAN, Ruth Manna, MPH, Megan Johnson Shen, PhD, Smita C. Banerjee, PhD, Stacey Penn, BSN, RN, OCN®, Cassandra Pehrson, MSW, Carol A. Krueger, MS, LCSW, Erin K. Maloney, PhD, Talia Zaider, PhD, and Carma L. Bylund, PhD

n Article

Discussing Death, Dying, and End-of-Life Goals of Care: A Communication Skills Training Module for Oncology Nurses

D espite nurses’ centrality in the process of the healthcare team communicating with patients, few receive formal education specific to communica- tion, particularly related to end-of-life care (Chant, Jenkinson, Randle, & Russell, 2002; Kruijver, Kerk-

stra, Bensing, & van de Wiel, 2000; Vydelingum, 2006). How- ever, nurses rank communication as one of the most important competencies to their practice (McCabe, 2004; McGilton, Irwin-Robinson, Boscart, & Spanjevic, 2006). Although nurses

generally feel confident in providing care for the physical needs of patients with cancer, they find addressing the patients’ emo- tional concerns to be more difficult (Rask, Jensen, Andersen, & Zachariae, 2009). These reported difficulties in communication exist among hospice nurses as well (Ellington et al., 2008; El- lington, Reblin, Clayton, Berry, & Mooney, 2012).

Nurses’ communication skills are crucial to patient care because they provide much of the care and support to patients and their families throughout the disease trajectory. Nurses

Background: Effective communication, particularly at the end of life, is an essential skill for oncology nurses, but few receive formal training in this area. Objectives: The aim of this article is to adapt an end-of-life care communication skills train- ing (CST) module, originally developed for oncologists, for oncology nurses and to evaluate participants’ confidence in using the communication skills learned and their satisfaction with the module.

Methods: The adapted end-of-life care module consisted of a 45-minute didactic, exemplary video and 90 minutes of small group interaction and experiential role play with a simulated patient. Using a five-point Likert-type scale, 247 inpatient oncology nurses completed pre-/post-workshop surveys rating their confidence in discussing death, dying, and end-of-life goals of care with patients, as well as overall satisfaction with the module. Findings: Nurses’ confidence in discussing death, dying, and end-of-life goals of care increased significantly after attending the workshop. Nurse participants indicated satisfaction with the module by agreeing or strongly agreeing to all six items assessing satisfaction 90%–98% of the time. Nurses’ CST in discussing death, dying, and end-of-life care showed feasibility, acceptability, and potential benefit at improving confidence in having end-of-life care discussions.

Nessa Coyle, PhD, APRN, FAAN, is a consultant, Ruth Manna, MPH, is the manager of the Comskil Program, Megan Johnson Shen, PhD, is a postdoctoral research fellow, Smita C. Banerjee, PhD, is an assistant attending behavioral scientist, Stacey Penn, BSN, RN, OCN®, is a clinical nurse, Cassandra Pehrson, MSW, is a training assistant for the Comskil Program, and Carol A. Krueger, MS, LCSW, is a patient representative, all at Memorial Sloan Kettering Cancer Center in New York, NY; Erin K. Maloney, PhD, is the research director for the Tobacco Center of Regulatory Science at the University of Pennsylvania in Philadelphia; Talia Zaider, PhD, is an assistant attending psychologist at Memorial Sloan Kettering Cancer Center; and Carma L. Bylund, PhD, is the associate director of medical education at the Hamad Medical Corporation in Doha, Qatar. The authors take full responsibility for the content of the article. The study was supported, in part, by funding from the Geri and ME Fund, Memorial Sloan Kettering Nursing Education, the Fridolin Charitable Trust, and a grant (T32-CA009461) from the National Cancer Institute. The content of the 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 the article have been disclosed by the independent peer reviewers or editorial staff. Coyle can be reached at nessacoyle@aol.com, with copy to editor at CJONEditor@ons.org. (Submitted January 2015. Revision submitted April 2015. Accepted for publication April 6, 2015.)

Key words: death; dying; end-of-life care; nurse–patient communication; transitions in goals of care; communication skills; training

Digital Object Identifier: 10.1188/15.CJON.697-702

© Susan Chiang/iStock

698 December 2015 • Volume 19, Number 6 • Clinical Journal of Oncology Nursing

are also more likely to be present at the time of death than any other healthcare professional (Wiegand & Russo, 2013). In ac- knowledgment of this reality, the Institute of Medicine (2010) reported that, although physicians have traditionally been responsible for these difficult end-of-life conversations, nurses are taking the lead with the advancement of nursing practice.

Key to improving nurses’ involvement in patients’ end-of- life care is training them how to communicate these issues to patients and their families. According to the American Nurses Association (2010), nurses have several responsibilities in car- ing for dying patients, including discussing life preferences and communicating relevant information. Because communication has been shown to be a cornerstone of improving patients’ qual- ity of care and quality of life (Wittenberg-Lyles, Goldsmith, Fer- rell, & Ragan, 2013), the National Consensus Project for Quality Palliative Care (2013) has emphasized the need for effective, compassionate communication in palliative care.

Nurses have reported that merely learning communication skills on the job is not enough (Humphris, 2002), suggesting the need for formalized training. To address this need, a variety of interventions to improve nurses’ communication skills and effi- cacy has been developed. The majority of communication skills training (CST) has been effective at increasing nurses’ abilities to provide psychosocial support to patients, their confidence in handling conflicts and criticism, and communication-related self-efficacy (Langewitz et al., 2010; Sheldon, 2011; van Weert, Jansen, Spreeuwenberg, van Dulmen, & Bensing, 2011; Wilkin- son, Linsell, Perry, & Blanchard, 2008). Most CST developed for nurses has focused on general communication, with partici- pants focusing on how to have difficult conversations and break bad news (Baer & Weinstein, 2013). Because of the prevalence of nurses present at the end of life (Wiegand & Russo, 2013) and their increased involvement in end-of-life care discussions (In- stitute of Medicine, 2010), developing CST modules for nurses that specifically target end-of-life care discussions is critical.

To address this key need, the researchers adapted and modi- fied a physician end-of-life care module for oncology nurses that already had been developed and evaluated by the researchers’ institution. In this adapted CST module, the researchers were able to incorporate the communication differences inherent in the nurse–patient relationship and the communication skills necessary to that relationship. The primary aim of this article is to discuss the content and adaptation of the CST module. The secondary aim of this article is to evaluate the module by report- ing the results on pilot self-report data on nurses’ confidence in discussing death and dying, their intention to use the skills they learned in training, and their overall satisfaction with the module.

Methods The CST and Research Laboratory, housed in the Department

of Psychiatry and Behavioral Sciences at Memorial Sloan Ket- tering Cancer Center (MSKCC) in New York, originally devel- oped a series of modules for physicians, which are described elsewhere (Bialer, Kissane, Brown, Levin, & Bylund, 2011; Brown, Bylund, Eddington, Gueguen, & Kissane, 2010). This curriculum has been shown to lead to improvements in the use of major communication skill sets in clinical settings (Bylund

et al., 2010). Based on nursing engagement surveys at MSKCC indicating a need and demand for training oncology nurses in communication skills, the researchers adapted this curriculum to fit the needs of nurses. The researchers’ laboratory created a multidisciplinary development committee including nursing experts in oncology nursing and end-of-life care. This article describes one of the modules that was adapted for the nursing CST, namely the “Discussing Death, Dying, and End-of-Life Goals of Care” module.

Framework

The training modules developed in the researchers’ laboratory are based on the Comskil Conceptual Model (Brown & Bylund, 2008), which describes clinical consultation communication as being composed of goals, strategies, skills, and process tasks. A communication goal is the desired outcome of a consultation or interaction. Goals are obtained through strategies, which are a priori plans that direct communication behavior toward the desired communication goal. Strategies are achieved using communication skills, which are defined as discrete, measurable units of speech in which a clinician can further the clinical dia- logue. Process tasks are sets of dialogue or nonverbal behaviors that create an environment for effective communication. Each of these components are put in a modular blueprint that details how these components work together for addressing specific topics within a clinical consultation or interaction (see Table 1).

The adaptation of the Discussing Death, Dying, and End-of- Life Goals of Care module for nurses included a series of seven steps used in the researchers’ prior work (Brown, Bylund, Gueguen, et al., 2010). These seven consecutive steps included (a) systematic literature review, (b) consensus review meetings (with researchers, communication skill experts, and nurses), (c) modular blueprint development, (d) training methods develop- ment, (e) scenario development (for role plays and exemplary video clips), (f) making necessary revisions and adaptations, and (g) assessment of the training module (Brown, Bylund, Eddington, et al., 2010).

Participants

From 2012–2014, 247 inpatient nurses working in the oncol- ogy setting at MSKCC participated in this CST module. Inpatient nurse specialties included acute care (n = 169, 68%), pediatrics (n = 39, 16%), critical care (n = 25, 10%), and urgent care (n = 14, 6%). Nurses were selected for this CST by their nurse lead- ers, with a focus on bedside and clinic nurses. On average, 12 nurses participated in the CST per session to allow all partici- pants to practice during the small group interaction and role play. Nurses who participated in this module also participated in two other modules to complete a day-long curriculum. These additional modules were titled “Responding Empathically to Patients” and “Responding to Challenging Interactions With Families.” Each module lasted about two hours. An institutional review board waiver was approved to allow the researchers’ laboratory to operate this training as a quality improvement initiative to the nursing CST curriculum. The exempt status allowed the laboratory to conduct CST training as a routine educational practice and permitted release of deidentified data on the effectiveness of this training program.

Clinical Journal of Oncology Nursing • Volume 19, Number 6 • Skills Training for Discussing End-of-Life Care 699

Modular Content

The overall communication goal for oncology nurses when discussing death, dying, and end-of-life goals of care is to sup- port patients and their family members during these discus- sions and to aid in decision-making processes regarding transi- tions in goals of care. The previous model for the physician’s module focused on clinical information regarding the progno- sis of the patients as well as reaching a shared understanding about their wishes at end of life. This module suggests five strategies, along with appropriate communication skills and process tasks, which allow nurses to achieve this desired goal of patient interaction across a number of patient and family interactions.

Strategies 1 and 2 involve establishing a relationship with the patients and developing an accurate, shared understanding of their situation. Endorsing question asking can address concerns or confusion the patient may have, allowing a shared under- standing to be reached. Checking the patients’ or their family’s understanding of the situation further enables the nurse to correct misunderstandings and increase shared understanding. Questioning skills, such as clarifying, also can help deepen the shared understanding of the patients’ situation and its implica- tions. Inviting patients’ or their family members’ agenda items into the discussion is also an important communication skill that allows patients’ and their family members’ concerns to be addressed.

Most commonly, bedside nurses are responsible for support- ing patients and their family members after having an end-of-life

discussion with their physician or advanced practitioner nurse (APN). Strategy 3 focuses on specific communication skills and process tasks that can be used to support the patients and their family members following the physician’s or APN’s discussion on transitioning from curative therapy to end-of-life care. Tak- ing stock of how the patient is feeling and asking open-ended questions (e.g., “What’s going through your mind?”) allows patients to tell the story in their own words and to express any concerns, confusion, or distress that they may be experiencing. These open-ended questions should be followed up by checking their understanding and endorsing further question asking to correct any remaining misunderstandings. Questioning skills (e.g., clarifying, restating), can be used to continue to deepen the shared understanding of their situation and emotional state. Sensitivity to patients’ emotional responses is an integral part of these conversations.

Strategy 4 represents the core communication skill of re- sponding empathically to patients’ emotions. In this strategy, the use of supportive skills (e.g., acknowledging, validating, normalizing patients’ emotions) is a practical way to help them feel understood and supported. Acknowledging patients’ emo- tions (e.g., “I can see how overwhelmed you are.”) is simply stating the emotion that the nurse observes. Validating patients’ emotions (e.g., “This must be so hard.”) goes a step further than acknowledging by indicating that the patient has a right to feel this way. Normalizing (e.g., “Most people in your situation feel the same way.”) indicates that their emotions are commonly experienced by others in similar situations. Finally, praising patients’ efforts (e.g., “I am so impressed by how you have

TABLE 1. Modular Blueprint for Discussing Death, Dying, and End-of-Life Goals of Care

Strategy Skills Process Tasks

Establish the relationship. • Endorse question asking. • Check patient and family understanding. • Invite patient and family agenda items.

• Ensure privacy and comfort. • Make partnership statements.

Develop an accurate, shared understanding of the patient’s situation, including disease features, prognosis without treatment, and psychosocial needs and concerns.

• Check patient and family understanding. • Clarify. • Check patient preference information.

• Discuss expectations. • Correct misunderstandings.

Support patients and their family following the physician’s discussion of death and dy- ing and end-of-life goals.

• Take stock. • Ask open questions. • Check patient understanding. • Endorse question asking. • Clarify. • Restate.

• Tailor to the patient’s preferences for level of detail. • Ask if a discussion of the dying process would be helpful. • Describe the natural dying process. • Avoid jargon and euphemisms. • Consider spiritual or religious needs. • Address specific cultural needs.

Respond empathically to patient’s emo- tional response.

• Ask open questions. • Encourage expression of feelings. • Acknowledge. • Validate. • Normalize. • Praise patient efforts.

• Allow time to integrate and allow for silence. • Offer tissues. • Touch, when appropriate.

Close the conversation. • Take stock. • Summarize. • Check patient understanding. • Make partnership statements.

• Emphasize the quality of symptom control and goals of care—a peaceful, natural death.

• Affirm courage. • Remind about team availability.

Note. The goal is to support patients and their family members during discussions and the decision-making process regarding end-of-life care.

700 December 2015 • Volume 19, Number 6 • Clinical Journal of Oncology Nursing

dealt with your illness.”) helps to solidify the nurse–patient partnership. When responding to patients’ emotions, nurses should allow for times of silence so that patients can process their emotions. When appropriate, physical touch (e.g., a hand on the arm) may help communicate that the nurse is responsive to their emotions.

Strategy 5 closes the conversation with acknowledging that a lot of information has been covered, acknowledging that patients and their family members may be overwhelmed, and reassuring them that the conversation will be continued in the future. As the conversation draws to a close, the nurse again should take stock of their understanding. The focus during these conversations is on things of importance to the patient as his or her life draws to a close. Although not all interactions with patients about transitions in goals of care to quality of life at the end of life can be touched on, each of these strategies and skills can be used across several conversations to help guide patients and their family members throughout the transition to end-of-life care.

Training Agenda and Process

Prior to attending the day-long CST, participants were asked

to review three workbooks, one designed for each module.

These workbooks served as preparation for the workshop

and as a resource for trainees after participation in training.

The workbook for the present module included supporting

literature and educational materials on effective ways to discuss

death, dying, and end-of-life goals of care, as well as frequently

asked questions on this topic.

At the beginning of this module, a nursing expert on end-

of-life care gave a 45-minute didactic slide presentation sum-

marizing the evidence-based literature on end-of-life care.

After this brief summary, the presentation focused on specific

strategies, communication skills, and process tasks that could

be used to accomplish the communication goals of support-

ing patients and their family members during discussions and

aiding patients and their family members in decision-making

processes regarding end-of-life care. Each strategy slide in the

didactic presentation included a 2–3-minute video clip of a

nurse demonstrating how the communication skills relevant to

that strategy could be helpful in a conversation. The name of the

specific communication skill being used was clearly displayed

at the bottom of the video during the recorded interaction to

reinforce the use of each skill presented.

Prior CST research shows that to improve communication

skills, training must be participatory and experiential (Parry,

2008). Therefore, following the didactic presentation, nurses

participated in an experiential role play in small groups (2–3

nurses) to practice the skills and strategies introduced in the

didactic presentation. Two trained facilitators—a nurse paired

with a communication specialist—led these small-group role-

play sessions. Facilitator training consisted of a three-hour

training described elsewhere (Bylund et al., 2008). Prepared

role-play scenarios were used to give nurses the opportunity to

practice their communication strategies and skills with trained

actors who simulated patients. Each scenario depicted a scene

in which a physician had just discussed transition to end-of-life

goals of care and the nurse stayed with the patient to respond

to the patient’s emotions and clarify what had been commu- nicated.

Each role-play session lasted about 90 minutes, and the time was divided equally among the 2–3 nurses. Prior to role play, the rules of confidentiality were outlined, anxiety on the part of the nurses was normalized, and the ability to take “time outs” was explained. At the start of role play, learners identified their learning goal for the standardized patient interaction and which communication skills they wanted to practice. During the scenarios, nurses had the opportunity to practice these communication skills. Following role play, nurses first were asked to reflect on their use of communication skills, name any communication skills used, and indicate whether they had met their learning goals. Next, they were given feedback from their peers, the facilitators, video playback, and, at the end of session, the actor in the role of the patient. This workshop followed best practice principles in adult learning of being learner-centered and experiential and involving individualized, targeted feed- back (Knowles, 1978).

Evaluation

At the end of the module, participants were given an evalu- ation form to complete anonymously. It included eight state- ments about the workshop using five-point Likert-type scales assessing participants’ levels of agreement or disagreement with each statement (1 = “strongly disagree” and 5 = “strongly agree”). In addition, a retrospective pre–post method (Hill & Betz, 2005) was used in the first two statements: (a) “Before this module, I felt confident discussing death, dying, and end-of-life goals of care,” and (b) “Now that I have attended this module, I feel confident discussing death, dying, and end-of-life goals of care.” The remaining items assessed nurses on post-training attitudes toward the skills they learned and asked how they could apply them during routine clinical practice, such as at the bedside.

TABLE 2. Course Evaluation Results of Participant Agreement Related to Discussing Death, Dying, and End-of-Life Care (N = 247)

Agree or Strongly Agree

Item n %

I feel confident that I will use the skills I learned today.

238 96

The skills I learned today will allow me to provide better patient care.

243 98

The workshop prompted me to critically evaluate my own communication skills.

240 97

The experience of video feedback was helpful to the development of my skills.

221 90

The skills I learned were reinforced through the feedback I received in the small group.

242 98

The small group facilitator was effective. 243 98

Clinical Journal of Oncology Nursing • Volume 19, Number 6 • Skills Training for Discussing End-of-Life Care 701

Results A paired-sample t-test indicated that participants’ confidence

in discussing death, dying, and end-of-life care goals increased significantly on the 1–5 Likert-type scale when compared be- fore (

— X = 3.09, SD = 1.03) and after (

— X = 4.07, SD = 0.69) they

attended the module (t246 = –18.66, p < 0.001). To interpret results from the remaining module assessment

items, the researchers remained consistent with their evalua- tion of prior module assessments (Bialer et al., 2011; Brown, Bylund, Eddington, et al., 2010). Namely, a rating of “agree” or “strongly agree” was considered to be an indicator of sat- isfaction with the workshop and its effectiveness in teaching communication skills regarding discussing death, dying, and end-of-life goals of care. Table 2 displays the percentages of workshop participants who agreed or strongly agreed with the six post-training items. Participants indicated satisfaction (e.g., agreed or strongly agreed) to all six items 90%–98% of the time.

Discussion Although effective communication is a core competency for

oncology nurses and a variety of CST models have been devel- oped (Langewitz et al., 2010; Sheldon, 2011; van Weert et al., 2011; Wilkinson et al., 2008), a module specifically designed to train oncology nurses on how to communicate issues surround- ing end-of-life care has not yet been created. To address this key need, the researchers adapted an end-of-life care module (from the physician module) for oncology nurses. This article outlines the methods used in adapting the module to assist on- cology nurses in communicating more effectively with patients and their families when transitioning from curative therapy to end-of-life care.

Results indicated that the present CST module significantly increased nurses’ confidence in discussing death, dying, and end-of-life care goals, and video feedback was helpful. In addi- tion, the majority of nurses said that they were satisfied with the course, indicating that this end-of-life care CST module is feasible. Finally, the majority of nurses agreed that the CST module helped them think more about their communication with patients and improved their ability to communicate with patients, suggesting that the communication skills learned in the module would be translatable to nursing practice.

Limitations

Because the CST module has a specific format and structure, it theoretically allows for replication to other institutions and comparison of evaluation results regarding the participants’ confidence in discussing death, dying, and end-of-life care goals. However, some institutions and certain settings (e.g., remote or rural cancer clinics) may lack the resources to replicate this training. Therefore, additional research should consider adap- tations of this CST module to allow for dissemination across a wider range of clinical settings.

In addition, although the results demonstrated that nurses’ confidence in discussing death, dying, and end-of-life care goals increased significantly when compared to those prior to attend-

ing the module, self-rated ability and satisfaction do not neces- sarily correlate with objective measures of performance (Mul- lan & Kothe, 2010). Therefore, the course cannot be assumed to have improved the communication skills of nurses in clinical practice. Evaluation of the nurses’ transfer of communication skills to the bedside is an important next step.

Finally, anonymity of the survey prevented the research- ers from conducting longitudinal follow-up with the nurses. Therefore, whether the positive training effects seen in the immediate post-training evaluation would be sustained weeks to months following the CST is not known. In the future, the researchers plan to follow up with nurses to determine the sustainability of using the skills learned in the CST in their clinical practice.

Conclusion The current study provides a solid framework for the develop-

ment of a CST module for inpatient oncology nurses when dis- cussing death, dying, and end-of-life care. This is a critical next step in training oncology nurses for specialized communication in cancer care. By equipping nurses to handle these sensitive topics, the quality of patient care surrounding transitions from curative to end-of-life care may be improved.

The authors gratefully acknowledge the nurse leaders for their support in recruiting for and helping facilitate this training.

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Received: Apr. 6th 2017; Accepted: July 18th 2017. Rev Rene. 2017 July-Aug; 18(4):528-35.

DOI: 10.15253/2175-6783.2017000400015 www.revistarene.ufc.br

Original Article

528

The process of death and dying: challenges in nursing care for patients and family members

Processo de morte e morrer: desafios no cuidado de enfermagem ao paciente e família

Maria Eduarda Grams Salum1, Carolina Kahl1, Kamylla Santos da Cunha1, Cintia Koerich1, Thiago Oliveira dos Santos1, Alacoque Lorenzini Erdmann1

Objective: to understand the actions and interactions performed by nurses in caring for patients and their family in the process of death and dying. Methods: a qualitative study implementing a theoretical and methodo- logical contribution of Grounded Theory. An individual interview was conducted with 18 participants, divided into three sample groups. Results: weakness in nurses’ training regarding the death-dying process, the impor- tance of the nurse-patient bond, family members support, and respect for the grieving process is apparent. As coping strategies, ongoing education, sharing experiences with peers and attachment to spiritual beliefs can be emphasized. Empathy appears as the main challenge, considering the influence of personal and bureaucratic factors. Conclusion: the way nurses respond to the challenges of their professional performance, seeking to build a bond with patients and families, supporting and respecting their process of mourning based on empathy stand out among the actions and interactions performed in care of the patient and family in the process of death and dying. Descriptors: Death; Attitude to Death; Nursing; Hospitals.

Objetivo: compreender as ações e interações suscitadas por enfermeiros no cuidado ao paciente e família em processo de morte e morrer. Métodos: pesquisa qualitativa com aporte teórico-metodológico da Teoria Funda- mentada nos Dados. Foi realizada entrevista individual com 18 participantes, divididos em três grupos amos- trais. Resultados: ressalta-se fragilidade na formação do enfermeiro sobre o processo de morte-morrer, impor- tância do vínculo enfermeiro-paciente, apoio aos familiares e respeito ao processo de luto. Como estratégias de enfrentamento, a educação permanente, compartilhamento de experiências com pares e apego às crenças espi- rituais. A empatia aparece como principal desafio, considerando a influência de fatores pessoais e burocráticos. Conclusão: destaca-se nas ações e interações suscitadas no cuidado ao paciente e família em processo de morte e morrer a maneira como os enfermeiros respondem aos desafios da atuação profissional, buscando construir vínculo com pacientes e familiares, apoiando e respeitando o processo de luto com base na empatia. Descritores: Morte; Atitude Frente à Morte; Enfermagem; Hospitais.

1Universidade Federal de Santa Catarina. Florianópolis, SC, Brazil.

Corresponding author: Maria Eduarda Grams Salum Avenida Elizeu di Bernardi, 446 – Campinas, CEP: 88101-050. São José, SC, Brazil. E-mail: dudasalum1@gmail.com

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Introduction

Death is a social construction formed of perso- nal experiences and it has a direct relationship with the cultural aspects in which the individual is inser- ted. Despite humans being aware that their existence happens within a cycle – birth, development, old age and death – many existential questions about the me- aning of life are raised when one experiences the pro- cess of death and dying(1-2).

Over the past decades, where death occurs has shifted from the home to the hospital, with a direct im- pact on the hospital structure since it was developed to provide care that tends to cure disease(3). Health professionals have their training focused on treating and preserving life, in addition to the various ways to recover and promote health. Death can often be seen as a setback in the profession, a reflection of vulne- rability and weakness, leading professionals to reflect on the finitude of life, and making it difficult to cope with death(2,4). Providing care for dying patients in the hospital setting is something usual for the health care team, and in particular for the Nursing team, which has the essence of the profession to provide care, give support, assistance and help patients and families who experience the process of death and dying.

In this sense, nurses need to be prepared to provide care for patients in the process of death and dying, since they also require dedication and assistan- ce. However, because it is a fragile moment, the team tends to feel impotent and frustrated, experiencing the loss of patients with whom they had the opportu- nity to interact during the hospitalization(2).

Although technological advances in health have grown and positively influenced the way people cur- rently die, being a direct reflection of the need for specialized and individualized care to the patient in the process of death and dying, we cannot say that ad- vances in the area of research on providing care to pa- tients experiencing the death and dying process have been equally satisfactory(5).

Considering the complexity and subjectivity of

the theme, it is essential to emphasize the importance of studies that allow reflection of the care given to pa- tients and family that experience the process of death and dying; moreover, the challenges faced by health professionals in this process, highlighting the nurse’s role as care manager in the various stages of living processes, being healthy, falling ill and dying, aiming at this process to happen in a humanized and com- prehensive way. Thus, considering the various aspects that involve and influence nurses’ performance regar- ding the process of death and dying, the present study aimed to understand the actions and interactions per- formed by nurses in the care of patients and families in the process of death and dying.

Methods

A qualitative research with the theoretical and methodological contribution of the Grounded Theory, which seeks to understand the reality based on the meanings of the relationships and interactions that a certain context or object has for a person, through a systematic analysis of the data in a way that structure and process are interdependent(6). The study site was a university hospital in the south of Brazil, in the sec- tors of the adult medical clinic and in the department of a nursing undergraduate course at a public univer- sity linked to the hospital, between March and May 2016.

The study sample was comprised of 18 partici- pants divided into three sample groups. The first sam- ple group consisted of nine full-time nurses in medical clinics I and II, whose inclusion criteria were: having already experienced the death process and death of a patient who was under their care, and having at least one year of practice as a nurse in a medical clinic unit. The guiding question for this group was “How do you signify the process of death and dying?” Next, more questions were directed to the participants to advan- ce the research and the understanding of the subject under investigation.

In analysing the interviews of the first group

Salum MEG, Kahl C, Cunha KS, Koerich C, Santos TO, Erdmann AL

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we noticed that the nurses associated the difficulties in dealing with the process of death and dying to their undergraduate training. Thus, it was hypothesized that graduation does not prepare nurses to deal with this process. In order to investigate this hypothesis, we chose to create a second sample group.

The second sample group was composed of six undergraduate nursing students from a Federal Uni- versity in southern Brazil. As inclusion criteria only students enrolled in at least the 7th Phase (=3.5 years) of the course who had already experienced the pro- cess of death and dying of a patient under their care in the field of training were interviewed. The dialogue started with the following guiding question: Tell me about your experience in caring for patients in the process of death and dying during your undergradu- ate internship.

Based on the analysis of the interviews of this group we noticed that students have difficulties in de- aling with the process of death and dying, despite the presence of a professor the internship field, and that the nursing training process presents gaps regarding this aspect. In this sense, three nursing department professors constituted a third sample group. The in- clusion criteria were: being a current and acting pro- fessor in the department and having taught classes on the subject or experienced the process of death and dying in the internship with the students. The ques- tion that guided and started the interviews was “Tell me how the teaching of the death-dying process is car- ried out in the nursing undergraduate course.” The ex- clusion criterion adopted for all three sample groups was not having experienced the death and dying pro- cess, regardless of the reason.

The data were collected in the place of choice of the participants through open and individual inter- views, previously scheduled via telephone contact and made after reading the objective informed consent term and accepting to participate in the research. The interviews were recorded through digital audio voice recording and later transcribed in full for analysis.

As recommended by the method, the compa- rative analysis process of the data occurred concomi- tantly to its collection, and was carried out in three stages. In the open coding, the concepts were iden- tified, and then grouped into categories according to their similarities. Then, in the axial coding, the cate- gories and subcategories were related in order to ob- tain a more in-depth explanation of the data, seeking a clearer and more complete explanation through a systematized analytical comparison process guided by the paradigmatic model of three components of the updated version of this component(6). “Condition” answers questions about why, when and how a given phenomenon happens, designated through an action; “Action-interaction” is the response expressed to such events or situations, as well as how people integrate and act upon meaning; and “consequence” expresses the expected or the actual outcomes and results. Fi- nally, in the integration stage, the categories were in- terconnected around a central category, in which the phenomenon entitled “Noticing the complexity of care in the process of death and dying” emerged.

Theoretical data saturation was achieved ba- sed on repeated information introduced by the parti- cipants regarding the phenomenon and the absence of new elements relevant to the research objective. Due to the relevance of the “actions-interactions” compo- nent, we chose to deepen its discussion in this study, considering that the integration and meaning of the participants’ actions promote understanding of the central phenomenon.

In order to ensure confidentiality and anonymi- ty of the participants, they were represented by the letter G to designate the sample group (G1, G2, G3), and by the letter E to designate the sequence that the interviews were carried out (E1, E2 …), thus presented as follows: G1-E2.

The study complied with formal requirements contained in national and international standards for research involving human beings.

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Results

Based on the relationship among the catego- ries, the phenomenon ‘Realizing the complexity of care in the process of death and dying’ emerged. The Action-Interactions category entitled ‘Unveiling ac- tions and interactions for care in the process of death and dying’ presents three subcategories; the first of them concerns actions occurring in the professional practice routine, and the other subcategories refer to coping strategies and challenges faced in the process of death and dying.

The first subcategory “Recognizing interactions with the patient and family in the process of death and dying in practice” emphasizes that in spite of the knowledge obtained during their course or through training on the subject of death, it is only possible to acquire experience and maturity to deal with situ- ations and aspects that involve the process of death and dying with daily practice, taking into account the uniqueness and individuality of human beings expe- riencing suffering. Although the workload of practical activities during graduation is extensive, most nurses report not having accompanied patients in the pro- cess of death and dying during training, which was interpreted as a difficulty to confront and raised their awareness of care behavior in facing this situation. Our profession is something that we learn every day, we will never have

complete knowledge, we will never know what our reactions will be

according to each situation, it is only by living them, actually living

them (G1-E2). Longer periods of hospitalization promote a

creation and strengthening of a bond between pa- tients, family members and nurses, meaning interac- tions and day-to-day care that are affectionate and fraternal. Such a bond and attentiveness are revealed as positive, since they evidence humanization and comprehensiveness of the care; however, they end up hindering the conduct to be followed in the process of death and dying. The relationship that is formed based on the (everyday) relationship that the professional has with the patient and

their family is very important, since the conduct to be taken during

the process will be based on this relationship… when we’ve already

had daily contact and a bond , when we’ve been talking and prepa-

ring the family, it is easier to deal with death (G2-E14). In this sense, extending care to family members

is essential, since the family experience the process of death and dying along with the patient. However, on the other hand, the situation may have a negative impact on family relationships and structure, consi- dering that the psycho-spiritual needs of family mem- bers in some circumstances exceed those of the pa- tient, and nurses end up providing psycho-emotional support and providing care to everyone. We have to find strength to face this moment of loss, to give support to the family…

Nursing professionals are the support for that family member at the

time of loss (G1-E4). Understanding the individuality and unique-

ness of each human being is necessary to respect the attitudes and stages of accepting death that can emer- ge in patients and their families. As a result of the pro- cess of death and dying, many feelings and attitudes such as anger, hostility, nervousness and impatience can manifest in patients and their family members, and respecting these reactions is paramount for com- prehensive care.

The second subcategory “Seeking strategies for coping with the process of death and dying” highlights the strategies for patient care in the process of death and dying, emphasizing the importance of investing in continuous education, as the experiences during an undergraduation, when opportunistic, are not enou- gh to prepare the professional to deal with the patient and their family in this process. I believe that it was easy for me to deal with the process of death and dying, not because my un-

dergraduation prepared me, but rather because I studied a lot later, I

took many courses and training on the subject (G1-E9). By focusing training toward preserving and

maintaining life, nurses perceive the process of death and dying as a barrier, since it represents failure in the objectives of their profession. Thus, dialoguing and sharing feelings between the team enables psycho- -emotional support for the professionals, conside- ring that by exchanging experiences and feelings with

Salum MEG, Kahl C, Cunha KS, Koerich C, Santos TO, Erdmann AL

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other professionals, nurses can perceive comfort and support, since contextualizing facts and knowledge exchange regarding the subject allow them to accept the process of death and dying. When I get really upset I usu- ally talk to other team members to see what they felt during the pro-

cess, we unburden ourselves with one another and we share feelings

and experiences (G1-E5). Another strategy highlighted is an attachment

to beliefs and religion to face the process of death and dying. Many participants demonstrate that such atta- chment enables them to find answers to existential questions involving death. My belief helps me a lot to accept and experience death situations because I believe that life does not

end here (G1-E9). The third subcategory “Understanding empa-

thy as a potential challenge for providing care in the process of death and dying” points out the difficulty in putting oneself in another’s place, given the indivi- duality of human beings. In this process, the patient’s personal experiences and their personality are in- fluencing factors. I see empathy as a permanent challenge, after all, we do not know what pain is until we feel it. Pain is something

very subjective and each of us feels it in their own way, which makes

“putting yourself in somebody else’s place” very difficult (G1-E3). The association performed by the participants

between the patient’s process of death and dying and personal situations experienced by them has been pointed out as a barrier, since feelings of remembe- ring a loved one who faced a similar process of death can be remembered. I do not feel prepared to deal with death, since I end up associating some patients with members of my (own)

family (G2-E15). Moreover, due to performing norms and rou-

tines (reporting the death when necessary, removing devices, clearing the bed) imposed by the institution, it is important to be careful not to lose sensitivity and humanization in the nursing care, which are funda- mental aspects for patient care in the process of death and dying. Often when we become professionals, we acquire a rou- tine, and as soon as death happens we want to provide postmortem

care and we (tend to) forget that this is the moment when the family is

facing the process of death and dying, and we must devote our atten-

tion to that family and the whole context in which they are inserted

(G1-E6). It is important to emphasize the importance of

the nurse understanding that the process of death and dying goes far beyond the moment of death, as prepa- ration and support of the patient and their relatives must precede and surpass death itself.

Discussion

This study aims to investigate data from a sin- gle nursing practice scenario, in a specific reality; thus, our findings cannot be generalized. Throughout their professional journey, many nurses are faced with situations in which they need to provide psycho- -emotional support to patients experiencing the dea- th process, which provides them the experience and confidence to deal with this process(7). This perspec- tive is in line with the statements of the participants, who emphasize the importance of helpful practice for becoming experienced in the necessary conducts/ actions. However, regarding the approach to patients and families, psychosocial support and assistance in physical comfort and relief can still be studied in the undergraduate program using simulation, thereby po- tentializing nurses’ clinical practice in this regard.

Professionals have a hard time accepting the finitude of life and the impossibility of preventing di- sease evolution. A study carried out in a hospital sho- wed that day-to-day experience influences changing conceptions and meanings for the care provided to patients in the process of death and dying(8). However, it is essential for clinical practice that nurses unders- tand and keep in mind the birth-to-death life cycle, thus realizing their role in this complex situation(9) that involves several factors, essentially understan- ding the grieving process.

Experiences that provide assisting patients who are experiencing the process of death and dying have a significant impact on the nurses’ trajectory,

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providing them a more realistic view, thus reassessing priorities such as humanization, non-judging and em- pathy during care(10).

Nurses working in sectors where long hospita- lizations are recurrent may feel sensitive to the death of a patient due to the unexpected end of relations es- tablished to which the bond is normally constituted(9, 11), reinforcing the participants’ reports that indicate affectionate connections with assisted patients who experienced the death process.

An international study performed in a hospital highlights the importance of the nurse-patient-family relationship in managing stress arising from situa- tions and procedures, in which the development and implementation of practices that bring family mem- bers closer to the health team in the final moments of the patient’s life are essential for coping with this process(12).

Including family members in care is essential for care comprehensiveness and for emphasizing the need for relief from psychological and spiritual sufferings present in the process of death and dying. Thus, it is the nurses’ responsibility to prioritize the grieving family’s worries and anxiety during the care to prepare them to accept the loss and deal with the pain(13). In this sense, hospital nurses emphasized the importance of including family members in decision- -making whenever possible, seeking to satisfy the ne- eds of the family who is experiencing the mourning(14).

According to the participants’ reports, perso- nal experiences and the caregivers’ personality are factors that influence empathy. An international study performed in a hospital corroborates such reports by stating that due to their singularity, each person mani- fests themself in a different way before death, perhaps feeling apprehension, anguish and anxiety(15).

The association between the process of death and dying with their personal experiences is a barrier pointed out by the participants and goes against a study that reinforces the idea that the death of ano- ther person confronts health professionals to their

own fragility and mortality, as well as of their loved ones(16). Furthermore, professionals and patients tend to avoid thinking about death due to the perception that thinking or articulating about it could accelerate the process of death and dying(17).

Comprehensive, sensitive, humanized and gen- tle care is seen by participants as essential when assis- ting patients in the process of death and dying. Such a conception is reinforced by a study that signifies the professional-patient relationship as “being with” and not “doing for,” leaving aside the care focused on tech- nical tasks and skills, and recognizing the patient as a human being inserted in diverse contexts depending upon bonds and connections(18).

As reported by the participants, investing in continuing education is indispensable, corroborating a study that found that teaching care for patients in the process of death and dying is fragile during profes- sional training, requiring constant training to impro- ve attitudes and skills in psycho-emotional care and support to the patient and family members who are experiencing this process(19).

The participants’ reports emphasize the im- portance of the team talking about their feelings and experiences among them as a form of psychoemotio- nal support, reinforcing the findings of a study that re- ports the importance of reducing levels of anxiety and fatigue by sharing experiences, thus helping to “nor- malize” death, seeking a deeper understanding of the meaning of life. Talking about death usually enables learning, encourages respectful treatment of others and favors effective decision-making(10,16).

Beliefs and spiritual practices can often help both the professional and the patient, who together reconstruct the meaning of life when faced with the pain of loss(17). One study points out that spiritual or religious confrontation during mourning is a strategy used to confront the experienced moment, providing inner strength, comfort and consolement(19).

The results of this study can aid in understan- ding the actions and interactions that involve care

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to the patient and family in the process of death and dying, and to raise discussions about the subject. It presents important support for nurses in this process, which requires complex actions and a demand for training and continuous education such as qualified listening, empathy and interdisciplinary action, along with understanding the mourning process stages, the use of religious belief, ethical care and the exchange of experiences with peers which are all essential for developing these actions.

Conclusion

Among the actions and interactions performed in caring for patients and their families in the process of death and dying, we can point out the way nurses respond to the challenges of their professional perfor- mance. Faced with a weakness in training on the the- me, they seek to build a bond with the patient and the family in order to guarantee care humanization and comprehensiveness, supporting and respecting their mourning process based on empathy and using spiri- tual beliefs and the sharing of experiences with their peers as coping strategies.

Acknowledgements

To Professor Dr. Laura Cristina da Silva Lisboa de Souza (in memoriam) for her teaching, especially regarding the theme of this study, and inspiration for humanized and welcoming Nursing.

Collaborations Salum MEG, Kahl C, Cunha KS and Koerich C

contributed to writing the article and to the relevant critical analysis of the content. Oliveira TS contributed to data design, collection, organization and interpre- tation. Erdmann AL supervised the study and gave ap- proval of the final version to be published.

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2. Arturo PP, Burciaga B, Verónica L, López L, Victoria M, Seañez M, Orvilia A. Resiliencia en el profesional de enfermería que cuida a personas en proceso de morir. Ene [Internet]. 2013 [citado 2017 mar. 12];7(2):2-5. Disponível em: http:// ene-enfermeria.org/ojs/index.php/ENE/article/ viewFile/280/pdf_12

3. Frias C. O cuidar da pessoa em fim de vida como experiência formadora. Av Enferm [Internet]. 2012 [citado 2017 mar. 11];(1):13-22. Disponível em: http://www.scielo.org.co/pdf/aven/v30n1/ v30n1a02.pdf

4. Oliveira PP, Amaral JG, Viegas SMF, Rodrigues AB. Percepção dos profissionais que atuam numa instituição de longa permanência para idosos sobre a morte e o morrer. Ciênc Saúde Coletiva. 2013; 18(9):2635-44. doi: http://dx.doi. org/10.1590/S1413-81232013000900018

5. Bloomer MJ, Endacott R, O’Connor M, Cross W. The ‘dis-ease’ of dying: Challenges in nursing care of the dying in the acute hospital setting. A qualitative observational study. Palliat Med. 2013; 27(8):757-64. doi: http://dx.doi. org/10.1177/0269216313477176

6. Corbin J, Strauss A. Basics of qualitative research: techniques and procedures for developing Grounded Theory. Los Angeles (CA): SAGE; 2015.

7. Mendes A. Nursing care to facilitate and support ‘good’ grieving. Br J Nurs. 2015; 24(2):95. doi: http://dx.doi.org/10.12968/bjon.2015.24.2.95

8. Sant’Ana RSV, Santos ER, Menezes TMO, Pereira A, Santana MTBM. A prática assistencial do enfermeiro frente ao processo de morte e morrer: uma revisão integrativa. Rev Enferm UFBE on line [Internet]. 2013 [citado 2017 mar. 11]; 7:919- 27. Disponível em: http://www.revista.ufpe.br/ revistaenfermagem/index.php/revista/article/ view/3486/pdf_2250

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9. Cardoso DH, Muniz RM, Schwartz E, Arrieira ICO. Hospice care in a hospital setting: the experience of a multidisciplinary team. Texto Contexto Enferm. 2013; 22(4):1134-41. doi: http://dx.doi. org/10.1590/S0104-07072013000400032

10. Veja P, Rodríguez RG, Torres CP, Jarufe EA, Bonilla JM, Díaz CO, Martínez SR. Develando el significado del proceso de duelo em enfermeras(os) pediátricas(os) que se enfrentan a la muerte de un paciente a causa del cáncer. Aquichan. 2013; 13(1):81-91. doi: http://dx.doi.org/10.5294/ aqui.2013.13.1.5

11. Mak YW, Chiang VCL, Chui WT. Experiences and perceptions of nurses caring for dying patients and families in the acute medical admission setting. Int J Palliat Nurs. 2013; 19(9):423-31. doi: http://dx.doi.org/10.12968/ijpn.2013.19.9.423

12. Hogan KA, Bourbonnais FF, Brajtman S, Phillips S, Wilson KG. When someone dies in the emergency department: perspectives of emergency nurses. J Emerg Nurs. 2016; 42(3):207-12. doi: http:// dx.doi.org/10.1016/j.jen.2015.09.003

13. Chan HYL, Lee LH, Chan CWH. The perceptions and experiences of nurses and bereaved families towards bereavement care in an oncology unit. Support Care Cancer. 2013; 21(6):1551-6. doi: http://dx.doi.org/10.1007/s00520-012-1692-4

14. Bloomer MJ, Morphet J, O’Connor M, Lee S, Griffiths D. Nursing care of the family before and after a death in the ICU – an exploratory pilot study. Aust Crit Care. 2013; (26):23-28. doi: http://dx.doi. org/10.1016/j.aucc.2012.01.001

15. Bloomer MJ, Endacott R, O’Connor M, Cross W. The ‘dis-ease’ of dying: Challenges in nursing care of the dying in the acute hospital setting. A qualitative observational study. Palliat Med. 2013; 27(8):757-64. doi: http://dx.doi. org/10.1177/0269216313477176

16. Gual ME, Sábado JT, Porras DB, Royo CM. The impact of death and dying on nursing students: an exploratory model. J Clin Nurs. 2014; (23):3501- 12. doi: http://dx.doi.org/10.1111/jocn.12602

17. Noble H, Kelly D, Hudson P. Experiences of carers supporting dying renal patients managed without dialysis. J Adv Nurs. 2012; 69(8):1829-39. doi: http://dx.doi.org/10.1111/jan.12049

18. Ek K, Westin L, Prahl C, Österlind J, Susann S, Bergh, Henoch I, Hammarlund K. Death and caring for dying patients: exploring first-year nursing students’ descriptive experiences. Int J Palliat Nurs. 2014; 20(10):509-15. doi: http://dx.doi. org/10.12968/ijpn.2014.20.10.509

19. Hawthorne DM, Youngblut JM, Brooten D. Parent spirituality, grief, and mental health at 1 and 3 months after their infant’s/child’s death in an intensive care unit. J Pediatr Nurs. 2016; (31):73-80. doi: http://dx.doi.org/10.1016/j. pedn.2015.07.008

Copyright of Revista da Rede de Enfermagem do Nordeste is the property of Revista de Rede de Enfermagem do Nordeste and its content may not be copied or emailed to multiple sites or posted to a listserv without the copyright holder's express written permission. However, users may print, download, or email articles for individual use.
BOOK REVIEW Edited by

David E. Balk

Taking Stock: Past Contributions and Current Thinking on Death, Dying, and Grief

A review of Beyond Kübler-Ross: New Perspectives on Death, Dying and Grief edited by Kenneth J. Doka and Amy S. Tucci. Washington, DC: Hospice Foundation of America, 2011. 156 pp. (ISBN: 9781893349131). $28.95. Reviewed by Dale G. Larson.

Kenneth J. Doka is Professor of Gerontology at the College of New Rochelle. Along with Terry L. Martin he wrote Grieving beyond Gender: Understanding the Ways Men and Women Mourn (Routledge, 2010).

Amy S. Tucci Vice President, Programs at Hospice Foundation of America, is the co-editor of Living with Grief (Hospice Foundation of America, 2007) and of End-of-Life Ethics: A Case Study Approach (Hospice Foundation of America, 2012).

Dale G. Larson, Professor of Counseling Psychology at Santa Clara University, is a Fellow in the American Psychological Association, a clinician and researcher, and the author of The Helper’s Journey: Working with People Facing Grief, Loss and Life-Threatening Illness (Research Press, 1993) and with Daniel R. Tobin wrote ‘‘End-of-Life Conversations: Evolving Theory and Practice,’’ published in JAMA, 284(12), 1573–1578.

In 1968 Elisabeth Kübler-Ross held weekly seminars at Billings Hospital on death and dying. I was an under- graduate at the University of Chicago, working my way through college with a summer job at Billings, and on my walks through the hospital I often passed the seminar room. The seminars intrigued me—even then, they had a buzz about them—but little did I know how they, and the energetic Swiss doctor who led them, would shape the field I was about to enter.

Now, four decades later, it seems like a good time to reflect on subsequent developments in the field of death and dying, and on the legacy of Elisabeth Kübler-Ross. Taking stock at this juncture is particularly timely because of mounting debate within the field on several key issues, including determining which are the most accurate and clinically useful models of the grieving

process, reconciling the grief work hypothesis with con- temporary empirical findings, deciding whether a diag- nosis of complicated or prolonged grief disorder should be included in DSM-5, understanding the role of antici- patory grief in coping with loss, and establishing whether grief counselling is helpful, inefficacious, or possibly even harmful.

Controversy concerning these issues is roiling in the public realm as well, with harsh critiques of Kübler- Ross’s stage model, of the notion of grief work, of the value of grief counseling, and of the bereavement field itself making headlines in the popular media and in books like The Truth about Grief: The Myth of Its Five Stages and the New Science of Loss (Konigsberg, 2011).

Fortunately, the Hospice Foundation of America recognized the need to gather some of the best thinking on these and other issues and has assembled leaders in the field to contribute their views to an edited volume. The final product, Beyond Kübler-Ross: New Perspectives on Death, Dying and Grief, is now available. Edited by Kenneth Doka and Amy Tucci, the book admirably achieves the goal of bringing readers up to date on cur- rent thinking and many important developments in the field. Contributing authors are Charles Corr, David Balk, Richard Tedeschi, Lawrence Calhoun, Elizabeth Addington, Paul Rosenblatt, Colin Murray Parkes, Louis Gamino, and Robert Neimeyer, with Doka also contributing a chapter. The book is organized into three sections: New Perspectives on Death and Dying, New Perspectives on Grief, and Implications for Practice.

Doka’s Introduction presents a concise and helpful summary and historical perspective for much of what follows, making some keen observations and providing definitions and synopses that serve a glossary-like func- tion for key terms and issues in the book.

Death Studies, 38: 349–352, 2014

Copyright # Taylor & Francis Group, LLC ISSN: 0748-1187 print=1091-7683 online

DOI: 10.1080/07481187.2013.837354

In the first chapter, Corr takes a revealing look at Kübler-Ross’s stage theory. In step with other authors in this volume, he points to the limitations of seeing dying in terms of linear, progressive stages: ‘‘Stages are too rigid, too linear, and above all too passive a metaphor for the rich, supple, and active processes that are involved in coping with dying’’ (p. 13). Despite the shortcomings of the stage model, Corr credits Kübler-Ross with huma- nizing the dying process and preparing the ground for the modern hospice movement to take root and grow.

The second chapter, also by Corr, explores anticipat- ory grief and mourning. Corr reflects on their role in coping with loss, illustrating central points with engag- ing family vignettes. One of his points is that pre- and postdeath grieving are not interchangeable: ‘‘Forewarn- ing,’’ he notes, ‘‘is not a sufficient condition for realistic anticipation’’ (p. 23). However, he adds, ‘‘for the most part, anticipatory grief and mourning are healthy and constructive experiences’’ (p. 28) that should be sup- ported. The need for such support may even be greater today than it was in the era of Kübler-Ross’s (1969) On Death and Dying, given the increasing percentage of us who will die from a chronic progressive disease. We are dying differently, and our grieving is different as well—what Okun and Nowinski (2011) have termed the new grief. Hospice appears to be a great resource in this regard, as evidenced by the finding that greater length of stay in hospice leads to better bereavement outcomes (Speer, Robinson, & Reed, 1995). These out- comes might be attributable to the many instances of anticipatory coping that are facilitated in routine hospice care, such as open discussions about death, planning for a funeral, saying good-bye, and expressing one’s feelings about losing a loved one.

Although critics like Konigsberg (2011) seem to believe that our thinking on death, dying, and grief began and ended with On Death and Dying, nothing could be less true. Tremendous work preceded On Death and Dying, and immediately after it appeared thanatolo- gists began critiquing the stage model while at the same time developing models that were less Procrustean and better able to accommodate the personal pathways (Doka, p. iii) reflected in dying and grieving experiences. In his chapter, Doka discusses task models, summarizing the Worden task model of grief (Worden, 2009) and his own and Corr’s task models for coping with dying. Changes in the illness and dying experience, he notes, led Weisman and Pattison to develop a model with dif- ferent phases in the ‘‘living-dying interval.’’ Indeed, all the efforts to go beyond the limitations of a progressive, linear stage model have also needed to keep pace with the changing realities of death, dying, and grief.

David Balk contributes an enlightening review of the contributions of Freud, Lindemann, and Bowlby, as well as Worden’s task and Kübler-Ross’s stage models and

the dual-process model of Stroebe and Schut. Balk also addresses the grief work hypothesis, identifying chal- lenges to it (e.g., differing bereavement trajectories, the dual-process model, continuing bonds) and counterargu- ments for these challenges. For example, he notes that although the dual-process proponents offer ‘‘empirical evidence showing that people who recovered from bereavement did not continuously confront the distress of the loss,’’ the dual-process model does not in itself ‘‘falsify the grief work hypothesis but rather discloses that prevailing understandings of grief work incom- pletely portray what coping with bereavement entails. A significant challenge would come if empirical data indicated it was common for most bereaved persons to spend all their time in the restoration process’’ (p. 53). My own view concerning the grief work hypothesis is that emotional processing, positive affect, and even denial can all play important roles in healthy self- regulation and we must avoid exalting one at the expense of the others (Larson & Hoyt, 2007). As someone conducting research on self-concealment, I find Balk’s discussions of adolescents camouflaging their grief, and bereaved parents’ reluctance to acknowledge the con- tinuing bonds they maintained with their dead child, quite fascinating.

Richard Tedeschi, Lawrence Calhoun, and Elizabeth Addington offer yet another perspective on coping with loss, one that they have advanced systematically in recent years: that positive transformation is a possible outcome of coping with loss. They emphasize the independence of suffering and growth and highlight the role of expert companions in facilitating the ‘‘cognitive processing of loss into growth’’ (p. 66). The responses of others, they argue, can both help and hinder processing of the loss; social constraints that inhibit disclosure and processing of loss experiences can reduce the likelihood of growing through, as well as going through, grief. This latter point is timely. We live in a society where the proportion of people with no close friends or family members has sky- rocketed in recent decades, and expert companions are becoming an even more precious resource for individuals facing grief and loss.

Another major development in the field has been increased attention to cultural issues in death, dying, and grief. Paul Rosenblatt uses a plethora of illuminating examples to show how ‘‘culture shapes grieving’’ (p. 79) and convincingly argues that sensitivity to cultural differ- ences, as opposed to ‘‘cultural ignorance,’’ is a prerequi- site for compent care. His extensive work in this area over four decades leads him to the conclusion that ‘‘some aspects of how people grieve may be common across cultures, but it is a mistake to say that all humans grieve in a certain way’’ (p. 78).

One of the most contentious issues in the field is whether to include a diagnosis of some variant of

350 BOOK REVIEW

complicated grief in the DSM-5. Doka and Tucci wisely invited luminary Colin Murray Parkes to write on this issue. He offers a thorough analysis of the debate and the issues involved, ultimately arguing for inclusion of a diagnosis of prolonged grief disorder. This is a debate that will not go away, and if prolonged grief disorder is included in the DSM-5, only time will tell whether grief is increasingly stigmatized and its treatment medicalized, including the possibility of new medications adminis- tered by psychiatrists with little time for verbal therapy.

Controversy is also swirling concerning the efficacy of grief counseling. Louis Gamino offers an excellent review of recent findings, concluding that ‘‘when grief counseling is needed, empirically-supported treatment methods are generally effective’’ (p. 125). He proposes a simple and elegant screening process to identify clients who may need counseling. The screening consists of two questions: Are you having trouble dealing with the death? and (if a positive response is given) Are you inter- ested in seeing a grief counselor to help with that? If counseling is undertaken, Gamino stresses that it needs to be administered by practitioners demonstrating death competence, defined as ‘‘specialized skill in tolerating and managing clients’ problems related to death, dying, and bereavement’’ (p. 121). Gamino may have put the debate to rest for the moment, but new evidence will continue to appear and help clarify who can benefit most from grief counseling and what kinds of interven- tions are most effective.

No matter what theoretical models bereavement spe- cialists might subscribe to, they must ultimately intervene, and in the final chapter Robert Neimeyer gives grief coun- selors some useful tools to work with. He suggests that rather than seeing grievers as stage followers passively and ineluctably conforming to distinct stages of grief, we instead view them as stage managers (more as the term is used in theatrical contexts) who are actively re-evaluating and reconstructing their schemata for self, others, and the world as they search for the meaning of the loss and the meaning of life without the deceased. He draws on a variety of sources (e.g., clinical innova- tions of process-experiential psychologists like Gendlin and Greenberg, and journal-writing interventions developed by Pennebaker), integrating these within his ownmeaning reconstruction framework for grief counsel- ling. He also highlights helpful constructs related to client management of distress and gives advice for how thera- pists can assist clients to strengthen grief-related social support. Clinicians will find this chapter most helpful.

This book could serve as an ancillary text in death education classes and is a valuable resource for all pro- fessionals and students working in bereavement and end-of-life care. Those needing more in-depth reviews of bereavement research and theory will need to also turn to the new edition of the Handbook of Bereavement

Research and Practice: Advances in Theory and Intervention (Stroebe, Hansson, Schut, & Stroebe, 2008), but for a condensed review of recent develop- ments, Beyond Kübler-Ross: New Perspectives on Death, Dying and Grief is a sensible choice.

Every book has a weakness or two. In a work like this, some redundancy is unavoidable, and it does exist here. There are also necessarily some missing pieces. Entire chapters on Worden’s task model, the dual-process model, and continuing bonds would have been nice additions. Finally, what’s new is sometimes not so new. Many of the contributions are minor revisions of earlier publications; however, the value to the field of having them together in updated form in a single volume more than compensates for their lack of freshness.

For me, these essays confirm the view that Kübler- Ross’s most significant and enduring contribution lies not in her stage theory. The stagemodel has never been empiri- cally supported, and it fails to meet essential criteria for psychological stages, like irreversibility, an invariant sequence, and universality, as well as not accommodating the uniqueness of each individual’s grief experience.

Her contribution lies instead in her call to action, her insistence that we listen to dying persons and stop avoid- ing the conversations that are essential to enhancing quality of life at the end of life. In On Death and Dying, she called for a sea change in how we approach death and dying, saying ‘‘It might be helpful if more people would talk about death and dying as an intrinsic part of life just as they do not hesitate to mention when someone is expecting a baby. If this were done, we would not have to ask ourselves if we ought to bring this topic up with a patient’’ (1969, p. 141). Lamaze for end of life isn’t here yet, but we have seen the continuing growth of hospice and palliative care and an increase in the kinds of conver- sations (Larson & Tobin, 2000) that hold the key to more humane care of dying patients and their families, includ- ing advance care planning efforts, more frequent and efficacious treatment goal discussions, and a wide range of bereavement interventions, including the art therapy Kübler-Ross held dear. From this perspective, recent advances in how we approach life’s final passage can be seen as moving us closer to—rather than beyond— the vision a strong-willed family doctor from Switzerland brought into the world.

REFERENCES

Konigsberg, R. D. (2011). The truth about grief: The myth of its five

stages and the new science of loss. New York, NY: Simon & Schuster.

Kübler-Ross, E. (1969).On death and dying. NewYork, NY:Macmillan.

Larson, D. G., & Hoyt, W. T. (2007). The bright side of grief counsel-

ing: Deconstructing the new pessimism. In K. J. Doka (Ed.), Living

with grief: Before and after the death (pp. 157–174). Washington,

DC: Hospice Foundation of America.

BOOK REVIEW 351

Larson, D. G., & Tobin, D. R. (2000). End-of-life conversations:

Evolving practice and theory. JAMA, 284, 1573–1578.

Okun, B., & Nowinski, J. (2011). Saying goodbye: How families can find

renewal through loss. New York, NY: Berkley Books=Penguin Group.

Speer, D. C., Robinson, B. E., & Reed, M. P. (1995). The relationship

between hospice length of stay and caregiver adjustment. Hospice

Journal, 10(1), 45–58.

Stroebe,M. S., Hansson, R. O., Schut, H., & Stroebe,W. (Eds.). (2008).

Handbook of bereavement research and practice: Advances in

theory and intervention. Washington, DC: American Psychological

Association.

Worden, J. W. (2009). Grief counseling and grief therapy (4th ed.). New

York, NY: Springer.

352 BOOK REVIEW

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