Nursing Care for Spiritual Pain in Terminal Cancer Patients: A Non-Randomized Controlled Trial.

CONTEXT: Spiritual well-being is important for terminal cancer patients; however, appropriate interventions remain to be established. OBJECTIVES: To evaluate the effectiveness of nursing care to alleviate spiritual pain in daily clinical practice using a Spiritual Pain Assessment Sheet-based spiritual care program for nurses (SpiPas-SCP-N). METHODS: A nonrandomized controlled trial was conducted in five palliative care units in Japan. The intervention group received spiritual care based on SpiPas-SCP-N by ward nurses. The primary outcome was the Functional Assessment of Chronic Illness Therapy-Spiritual (FACIT-Sp). Secondary outcomes included: Hospital Anxiety and Depression Scale (HADS), Comprehensive Quality of life Outcome (CoQoLo), and the Japanese version of the M.D. Anderson Symptom Inventory (MDASI-J). Propensity score matching was used for adjustment. RESULTS: Terminal cancer patients were assigned to the control and intervention groups (n = 140 and 157, respectively); of whom, 97 (69.8%) and 106 (68.0%), respectively, completed two weeks. Seventy-three patients were matched in each group. The total score of FACIT-Sp increased in the intervention group and decreased in the control group; however, there was no significant difference (95% CI, -3.98, 1.41, P = 0.347). HADS total score significantly increased (95% CI, 0.15, 3.87, P = 0.035), whereas there were no significant changes in CoQoLo and MDASI-J scores. The effect size of changes in FACIT-Sp subscales were 0.25 in the meaning/peace subscale and 0.04 in the faith subscale. CONCLUSION: SpiPas-SCP-N for spiritual pain may have a positive impact on terminal cancer patients. Future research using larger samples, randomized design, and the meaning/peace subscale of FACIT-Sp as the primary outcome is necessary as well as supervision and continuous training in daily nursing practice.

Experiences of dialogue in advance care planning educational programs.

BACKGROUND: Advance care planning (ACP) is a process in which adults engage in an ongoing dialogue about future medical treatment and care. Though ACP is recommended to improve the quality of end-of-life care, the details of the dialogue experience in ACP are unknown. OBJECTIVE: To explore participants' experiences of dialogue in an ACP educational program that encouraged them to discuss the value of a way of life. RESEARCH DESIGN: This qualitative descriptive study used the focus group interview method. Data were analyzed using qualitative content analysis. PARTICIPANTS AND RESEARCH CONTEXT: A dialogue-based ACP educational program was conducted in four regions in Japan for local citizens to discuss the value of their way of life. A total of 66 individuals (mean age = 55.5 ± 17.2 years; 50 women and 16 men) participated in focus group interviews. ETHICAL CONSIDERATIONS: This study was approved by the Ethical Review Committee of Tokyo Women's Medical University (no. 4723) and Kyoto University (no. R2099). FINDINGS: Five main themes were extracted: discussing one's thoughts with others in a considerate manner, reflecting on one's way of life through others, feeling a sense of connection with others through storytelling, realizing the difficulties of talking about "what if" topics, and turning one's eyes toward the future through the dialogue. These themes were interrelated and illustrated the complexity of the experience of discussing values. CONCLUSIONS: The results suggest that dialogue in ACP is useful in clarifying values. They also indicated the need for dealing with the ethical challenges of discussing value and the importance of caring for the interlocutor to have a safe dialogue. In the ACP process, safety in dialogue may improve readiness in ACP, and health practitioners who support ACP need to address the ethical challenges entailing dialogue about values.

Posttraumatic Growth as a Process Beginning Before Bereavement: New Perspectives on Theory Development.

Calhoun and Tedeschi's growth model focuses on cognitive processing after bereavement but it does not show the change in life narrative from beforehand. Our qualitative study aimed to clarify bereaved family growth and revealed new perspectives on posttraumatic growth (PTG), including that the PTG process involves a pre-bereavement experience and is not limited to positive psychological changes.Based on the two new perspectives, a discussion of PTG theory reveals that bereaved families' PTG can only be accurately captured if the pre-loss experience is included; thus, Calhoun and Tedeschi's growth model, which only captures the post-loss process, is insufficient. Additionally, positive psychological changes are not the only type of growth. When considering growth, one must focus on the process, including the experience of the person realizing that it is "okay to be who they are."

Growth Experience Bereaved of a Spouse by Cancer: Relying on Merleau-Ponty's Reorganization of the Body Schemes.

The grief experienced by bereaved families can lead to positive changes, and its relevance to the emerging concept of posttraumatic growth has been explored. However, studies on survivors bereaved of a spouse by cancer are scarce; consequently, the nature of growth remains poorly understood. This study aimed to explore the growth experiences of survivors bereaved of a spouse by cancer. Based on Merleau-Ponty's theory of the body, we phenomenologically analyzed narratives/qualitative data collected through interviews of 21 survivors bereaved of a spouse by cancer. The assessment of the growth of survivors bereaved of a spouse by cancer began before the bereavement, with the questioning of habits with the living spouse because of illness and prognosis announcement and/or bereavement, reaffirming the connection with the spouse, realizing that it provides emotional support, and becoming accustomed to who they are now in the new environment.

Experience of the temporary discharge from the inpatient palliative care unit: A nationwide post-bereavement survey for end-of-life cancer patients.

Objective: Inpatient palliative care units (PCUs) have two roles: place of death and symptom control. In case of symptom control, most patients whose distressing symptoms could be relieved would be temporarily discharged back home. However, the experience of the patient and their family during temporary discharge is unclear. Methods: This study is a part of the Japan HOspice and Palliative Care Evaluation Study 3, a nationwide cross-sectional post-bereavement survey. We sent questionnaires to bereaved relatives of cancer patients who died in PCUs in 2018. Results: Among 968 questionnaires sent, 571 questionnaires were analyzed (59%). Sixteen percent of patients experienced temporary discharge from PCUs. Seventy-two percent of bereaved family members reported that patients said "I am happy to be discharged home." Overall, 22%-37% of participants reported improvement in the patient's condition after discharge. The caregiver's recognition of better patient's quality of life at home and the doctor's assurance of re-hospitalization, if necessary, were significantly associated with positive experience. Conclusions: Bereaved family members recognized temporal discharge as positive experiences for patients and families. Appropriate home palliative care and discharge planning would contribute to positive experience after discharge.

Strategies to Understand What Matters to Advanced Cancer Patients in Advance Care Planning: A Qualitative Study Using the Lifeline Interview Method.

Little is known about how health care providers should conduct advance care planning to identify the values of East Asian patients who have serious illnesses. This study aims to explore whether and how patients from an East Asian culture and with advanced cancer express their values and priorities when nurses utilize the lifeline interview method to enable patients to reflect on their life trajectories and if it can bridge advance care planning discussions. Data obtained from individual, semistructured interviews of 11 patients with advanced lung cancer were analyzed using qualitative content analysis. Seven main themes were identified: (1) treatment and essential elements to maintaining everyday life, (2) beliefs regarding and support for being "myself", (3) emotional ups and downs in response to physical condition, (4) competency to cope, (5) what I want to do "now" to achieve my goals, (6) goals that bring hope for life, and (7) wishes and preferences for end-of-life decision-making. Results suggest that the lifeline interview method is an excellent means for nurses and other health care professionals to elicit patients' values and priorities. Moreover, it bridges advance care planning discussions to reflect on what matters to patients in future palliative care.

Association between temporary discharge from the inpatient palliative care unit and achievement of good death in end-of-life cancer patients: A nationwide survey of bereaved family members.

AIM: To explore the unclear association between temporary discharge home from the palliative care unit and achievement of good death, in the background of increases in discharge from the palliative care unit. Association between experiences and circumstances of patient and family and duration of temporary discharge was also examined. METHODS: This study was a secondary analysis of data from a nationwide post-bereavement survey. RESULTS: Among 571 patients, 16% experienced temporary discharge home from the palliative care unit. The total good death inventory score (p < .05) and sum of 10 core attributes (p < .05) were significantly higher in the temporarily discharged and stayed home ≥2 weeks group. Among all attributes, "Independent in daily activities" (p < .001) was significantly better in the temporarily discharged and stayed home ≥2 weeks group. Regarding the experience and circumstance of patient and family, improvement of patient's appetite (p < .05), and sleep (p < .05) and peacefulness (p < .05) of family caregivers, compared to the patient being hospitalized, were associated with longer stay at home after discharge. CONCLUSIONS: Patient's achievement of good death was better in the temporarily discharged and stayed home longer group, but this seemed to be affected by high levels of independence of the patient. Temporary discharge from the palliative care unit and staying home longer was associated with improvement of appetite of patients and better sleep and mental health status of family caregivers. Discharging home from palliative care unit is worth being considered even if it is temporary.

Developing an Instrument to Assess the Readiness for Advance Care Planning.

CONTEXT: In recent times, advance care planning for patients' end-of-life care preferences has attracted much attention worldwide. OBJECTIVES: To develop the Readiness for Advance Care Planning (RACP) Scale. METHODS: Participants included 624 Japanese citizens who were registered with a web-based survey company as of February 2019. Items regarding the process of advance care planning (ACP) were developed based on a literature review and expert panel discussions. The expert panel included nine experts and practitioners in the field of end-of-life care. Construct validity, concurrent validity, internal consistency, and test-retest reliability were evaluated. RESULTS: Initially, 37 items were collected. Examination of the floor effect, item-total, good-poor analysis, and exploratory factor analysis yielded a five-factor model with 28 items. The goodness of fit of the model was GFI = 0.80, CFI = 0.91, and RMSEA = 0.08. The concurrent validity was statistically significant (rs = 0.26-0.45, ps < 0.001). Cronbach's alpha for the overall scale was 0.95. The corresponding values for the subscales ranged from 0.90 to 0.97. The intraclass correlation coefficients indicating test-retest reliability was 0.66 (P < 0.001) for the total scale and ranged from 0.52-0.65 for the five subscales. CONCLUSIONS: The validity and reliability of the scale were generally acceptable. The RACP is an appropriate instrument to evaluate the level of readiness for ACP behaviors among people of various generations at every health stage. More studies are needed to examine the clinical utility of the RACP, both nationally and internationally.

Family Members' Experience of Discussions on End-of-Life Care in Nursing Homes in Japan: A Qualitative Descriptive Study of Family Members' Narratives.

In nursing homes, discussions between family members and staff regarding the end of life for residents with cognitive impairment are crucial to the choice of treatment and care consistent with residents' wishes. However, family members experience burden in such discussions, and communication with staff remains inadequate. The purpose of this qualitative descriptive study was to elucidate the meaning of continuous end-of-life discussion for family members. Data were collected using semistructured individual interviews. Thirteen family members of residents from 3 nursing homes in Kyoto, Japan, participated in the study. Data were analyzed using thematic analysis, which focused on both explicit and implicit meanings. Four themes emerged regarding the experience of end-of-life discussion: "the end of life soaking in," "hardship of making the decision to end my family member's life," "wavering thoughts about decisions made and actions taken," and "feeling a sense of participation about the care." Family members had come to accept the deaths of residents through continuous discussion and experienced strong conflict in facing the death of their family members. Moreover, staff members should understand family members' beliefs and the burden they experience in facing residents' death.

Factors associated with the job satisfaction of certified nurses and nurse specialists in cancer care in Japan: Analysis based on the Basic Plan to Promote Cancer Control Programs.

BACKGROUND: As the Japanese population ages, the number of cancer patients will likely increase. Therefore, qualified cancer health care providers should be recruited and retained. Nurse job satisfaction is influenced by numerous factors and may affect staff turnover and patient outcomes. OBJECTIVES: To evaluate the job satisfaction of certified nurses and nurse specialists in Japanese cancer care and elucidate factors associated with job satisfaction. METHODS: Participants in this cross-sectional study comprised 200 certified nurse specialists and 1,472 certified nurses working in Japanese cancer care. A chi-square test and logistic regression analysis were conducted to identify job satisfaction factors. RESULTS: Job satisfaction was present in 38.45% and 49.00% of certified nurses and nurse specialists, respectively. Certified nurses associated job satisfaction with cross-departmental activities (OR 2.24, p<0.001), positive evaluation from senior stuff (OR 4.58, p<0.001), appropriate staff allocation (OR 1.75, p<0.001), more than five years certified nurse experience (OR 1.91, p<0.001), and positive evaluation of the development of certified nurses (OR 2.13, p<0.01) and nurse specialists (OR 1.37, p<0.05). Low job satisfaction was associated with working on a ward (OR 0.51, p<0.001) and a capacity of more than 200 beds (OR 0.33, p = 0.00). Certified nurse specialists associated job satisfaction with palliative care team participation (OR 2.64, p<0.05), cross-sectional activities (OR 7.06, p<0.01), positive evaluation from senior stuff (OR 13.15, p<0.001), presence of certified nurses in radiation therapy (OR 2.91, p<0.05), positive certified nurse specialist development evaluation (OR 7.35, p<0.001), medical service fees (OR 3.78, p<0.01), and independent activities (OR 11.34, p<0.01). CONCLUSIONS: We identified factors related to activities, facilities, and the cancer care team associated with job satisfaction of certified nurses and nurse specialists in Japanese cancer care. Suggestions are provided to enhance job satisfaction through Japan's Basic Plan to Promote Cancer Control, which may help hospital administrators retain nursing staff.

Effectiveness of spiritual care using spiritual pain assessment sheet for advanced cancer patients: A pilot non-randomized controlled trial.

OBJECTIVE: To obtain preliminary knowledge to design a randomized controlled trial to clarify the effects of spiritual care using the Spiritual Pain Assessment Sheet (SpiPas). METHOD: The study was designed as a nonrandomized controlled trial. The study took place between January 2015 and July 2015 in a hematology and oncology ward and two palliative care units in Japan. Among 54 eligible patients with advanced cancer, 46 were recruited (24 in the control group vs. 22 in the intervention group). The intervention group received spiritual care using SpiPas and usual care; the control group received usual care. The primary outcome was the Functional Assessment of Chronic Illness Therapy-Spiritual (FACIT-Sp). The secondary outcomes were the Hospital Anxiety and Depression Scale (HADS) and Comprehensive Quality of Life Outcome (CoQoLo).ResultA total of 33 (72%) and 23 (50%) patients completed 2- and 3-week follow-up evaluations, respectively. The differences in the changes during 2 weeks in total scores of FACIT-Sp and HADS were significant (95% confidence intervals, 3.65, 14.4, p < 0.01; -11.2 to -1.09, p = .02, respectively). No significant changes were observed in the total score of CoQoLo.Significance of resultsSpiritual care using the SpiPas might be useful for improving patient spiritual well-being. This controlled clinical trial could be performed and a future clinical trial is promising if outcomes are obtained within 2 weeks.

Development of an Instrument for Evaluating Nurses' Knowledge and Attitude Toward End-of-Life Care: End-of-Life Nursing Education Consortium-Japan Core Quiz.

This study aimed to develop a scale focusing on knowledge and attitudes toward palliative care and end-of-life care for nurses and to confirm the scale's validity and reliability. We conducted a self-administered questionnaire survey with 1745 nurses of 10 hospitals all over Japan. We also examined the test-retest reliability of items for 205 of the nurses, 2 weeks after the first survey was completed. We used item-response theory, factor analysis, and intraclass correlation coefficients. The response rate was 44.5% (n = 762). Ninety items in 9 domains about knowledge of palliative care and end-of-life care were selected by using item-response theory. For knowledge items, Kuder-Richardson-20 was 0.85, and intraclass correlation coefficient was 0.84 in all domains. Ten items in 3 domains about attitudes toward palliative care and end-of-life care were selected by using exploratory factor analysis. For attitude items, Cronbach's α coefficient was .90, and intraclass correlation coefficient was 0.80 in all domains. The developed scale, named the End-of-Life Nursing Education Consortium-Japan Core Quiz, has sufficient validity and reliability. This scale may contribute to assessing the effectiveness of the End-of-Life Nursing Education Consortium-Japan Core Curriculum Nursing Education Program in Japan.

Nurse education program on meaninglessness in terminally ill cancer patients: a randomized controlled study of a novel two-day workshop.

BACKGROUND: Fostering patients' sense of meaning is an essential task for palliative care clinicians. Few studies have reported the effects on nurses of a short-term training program aimed at improving skills to relieve feelings of meaninglessness in terminally ill cancer patients. OBJECTIVE: The primary aim of this study was to determine the impact on nurses of a novel two-day education program focusing on care that addresses patients' feelings of meaninglessness. Measured were impacts on nurses' confidence, self-reported practice, attitudes toward caring for such patients, burnout, meaning of life, and knowledge. METHODS: This study was a randomized controlled trial using the waiting list control. Intervention consisted of a two-day interactive education program. A total of 76 nurses randomly allocated to two groups completed the study. Outcome measures included confidence scale; self-reported practice scale; scales of nursing attitudes toward caring for patients who experience feelings of meaningless (willingness to help, positive appraisal, helplessness, nurse-perceived value of being, and nurse-perceived value of patients' inner power); Maslach burnout scale, Functional Assessment of Chronic Illness Therapy-Spiritual, and knowledge scale. RESULTS: There were significant intervention effects in nurse-reported confidence and nurse-perceived value of patients' inner power. Nurse-reported helplessness showed marginally significant improvement after intervention (p=0.067). No significant intervention effects were observed in the self-reported practice scale; attitudes toward caring for patients (willingness to help, positive appraisal, and nurse-perceived value of being); burnout scale, meaning of life; and knowledge score. The percentages of nurses who evaluated this program as useful or very useful were 95% (understanding the conceptual framework) and 85% (helping to learn how to provide care for patients feeling meaninglessness in clinical practice). CONCLUSION: This short-term educational intervention had a significant beneficial effect on nurses' confidence and modest effects on attitudes.

Sublingually administered scopolamine for nausea in terminally ill cancer patients.

PURPOSE: The primary aim of this study was to clarify the effect of sublingual scopolamine on the intensity of nausea. PATIENTS AND METHODS: This was an open uncontrolled study, and the study participants were cancer patients consecutively admitted to a palliative care unit in Japan. When the patients had nausea, they were administered a solution of scopolamine at 0.15 mg sublingually. The intensities of nausea were assessed using the 6-point Numerical Rating Scale (NRS 0 = no nausea to 5 = worst nausea) before and 15, 30, and 60 min after administration. Primary endpoints were (1) changes in the NRS of nausea and (2) percentage of patients who achieved a decrease in NRS of 1 or more points 15 min after treatment. RESULTS: Twenty-six patients were recruited for this study. The median NRS significantly decreased from 3.0 (range, 1-5) to 1.5 (0-5) after 15 min, and 84 % (n = 21) of the patients achieved a decrease in NRS of 1 or more points after 15 min. In addition, the median NRS significantly decreased from 3.0 (before) to 0 (30 min) and 0 (60 min). The percentage of patients who achieved a decrease in NRS over 1 point was 96 % (n = 25) in 30 min and 100 % (n = 26) in 60 min. Fifteen percent (n = 4) showed drowsiness. No other adverse effects were reported. CONCLUSION: Sublingually administered scopolamine may be effective for managing nausea in terminally ill cancer patients. Randomized controlled trials are promising.

Meaninglessness in terminally ill cancer patients: a validation study and nurse education intervention trial.

Recent empirical studies revealed that fostering patients' perception of meaning in their life is an essential task for palliative care clinicians. However, few studies have reported the effects of training programs for nurses specifically aimed at improving skills to relieve the meaninglessness of terminally ill cancer patients, and we have had no specific measurement instruments. The primary aims of this study were 1) to validate measurement tools to quantify nurses' self-reported practice and attitudes toward caring for terminally ill cancer patients feeling meaninglessness and 2) to explore the effects of the five-hour educational workshop focusing on meaninglessness on nurses' self-reported practice, attitudes toward caring for such patients, confidence, burnout, death anxiety, and meaning of life. A quasi-experimental pre-post questionnaire survey was performed on 147 nurses. The questionnaire was distributed before the intervention workshop and one and six months after. The workshop consisted of lecture, role-play, and the exercise of assessment and care planning based on two vignette verbatim records. First, using the first questionnaire sample and an additional sample of 20 nurses for the test-retest examination, we validated a six-item Self-Reported Practice scale, and an eight-item Attitudes Toward Caring for Patients Feeling Meaninglessness scale with three subscales (Willingness to Help, Positive Appraisal, and Helplessness). The nurses also completed a scale to assess confidence in caring for terminally ill patients with meaninglessness, the Maslach Burnout Inventory, the Death Attitude Inventory, the Frommelt Attitudes Toward Care of the Dying scale, the Self-Reported Practice Score in General Communication, and the three pain-related items from the Palliative Care Quiz for Nursing. For the Self-Reported Practice scale and the subscales of the Attitudes Toward Caring for Patients Feeling Meaninglessness scale, the Cronbach's alpha coefficients were 0.63-0.91, and the intra-class correlations were 0.89-0.94. The Self-Reported Practice scale significantly, but moderately, correlated with the Self-Reported Practice Score in General Communication (P=0.41). The Willingness to Help and Helplessness subscales significantly but weakly correlated with the Frommelt scale (P=-0.27, 0.21). Both scales did not correlate or minimally correlated with the Palliative Care Quiz for Nursing (P<0.20). The construct validity was confirmed using factor analysis. At the follow-up, of 147 nurses who participated in this workshop, 91 (62%) and 80 (54%) nurses responded. Self-reported practice and confidence significantly improved, whereas helplessness, emotional exhaustion, and death anxiety significantly decreased. The percentages of nurses who evaluated this program as "useful" or "very useful" were 79% (to understand the conceptual framework in caring for terminally ill patients with meaninglessness), 73% (to help in self-disclosing nurses' personal beliefs, values, and life goals), and 80% (to help in learning how to provide care for patients with meaninglessness). The Self-Reported Practice scale and the Attitudes Toward Caring for Patients Feeling Meaninglessness scale are reliable and valid tools to specifically quantify nurses' self-reported practice and attitudes toward caring for terminally ill cancer patients feeling meaninglessness of life. The five-hour workshop appeared to have a modest but significant beneficial effect on nurse-reported practice, attitudes, and confidence in providing care for terminally ill cancer patients feeling meaninglessness. Further educational intervention trials with control groups are promising.

Development of a spiritual pain assessment sheet for terminal cancer patients: targeting terminal cancer patients admitted to palliative care units in Japan.

OBJECTIVE: This research explores the potential benefit of a spiritual pain assessment sheet to clinical practice. With spiritual pain defined as "pain caused by extinction of the being and meaning of the self," the spiritual pain assessment sheet was developed by Hisayuki Murata from his conceptual framework reflecting the three dimensions of a human being as a being founded on temporality, a being in relationship, and a being with autonomy. The assessment sheet was developed from reviews of the literature and examinations from a philosophical perspective on the structure of spiritual pain. METHODS: Patients admitted to palliative care units in Japan were interviewed using the assessment sheet. The responses were analyzed qualitatively. The usefulness of the assessment sheet and the burden placed on the patients by its use were also investigated. RESULTS: The spiritual pain elucidated by the assessment sheet was the same as that revealed in the earlier research of Morita. The patients reported that they did not find the use of the assessment sheet a burden, and more than half reported that it was useful. The burden of the assessment sheet on the subjects was thus determined to be low. Positive feedback on the assessment sheet was also received from the nurses who conducted the patient interviews, who said the assessment sheet made it easier to talk with the patients about their spiritual pain. SIGNIFICANCE OF RESEARCH: The research results indicate that the spiritual pain assessment sheet provided an appropriate assessment of spiritual pain among terminal cancer patients, showing that such a sheet could be used as an assessment tool in the future.

Caring for the spiritual pain of patients with advanced cancer: A phenomenological approach to the lived experience.

OBJECTIVE: The aim of this research was to reveal, from the perspective of the "lived experience" shared by cancer patients and their nurses, how patients facing death create lived experience in the context of palliative care. This research also aims to elucidate the meaning nurses find in patients' experiences while caring for their patients. METHODS: The participants in this study were cancer patients who were given opportunities to discuss events and concerns in their daily lives, with the interactions guided by the researchers. Transcriptions of conversations with the patients were analyzed using the method for empirical data classification set forth by Giorgi (1985) with appropriate modification. RESULTS: This study found that when the nurse correctly interprets the meaning of the concerns (Heidegger, 1962) of the patient facing death and shares that meaning with the patient, fundamental questions naturally arise for the patient. Answering these questions becomes possible only through interactions that require the reexamination of the values of the patient and the nurse. SIGNIFICANCE OF RESEARCH: This research elucidates the spiritual pain experienced by cancer patients and discusses opportunities for nurses to address the spiritual care of these patients.