Original Article
Does the Approach of Disclosing More Detailed Information of Cancer for the Terminally Ill Patients Improve the Quality of Communication Involving Patients, Families, and Medical Professionals?
American Journal of Hospice & Palliative Medicine® 2015, Vol. 32(7) 776-782 ª The Author(s) 2014 Reprints and permission: sagepub.com/journalsPermissions.nav DOI: 10.1177/1049909114548718 ajhpm.sagepub.com
Nobuhisa Nakajima, MD, PhD1, Kenju Kusumoto, MD, PhD2, Hideki Onishi, MD, PhD3, and Mayumi Ishida, CP, PhD3
Abstract Purpose: Effective and faithful communication between patients and medical professionals could improve patients’ quality of life and is an essential and fundamental factor in cancer treatment. The purpose of this study was to examine whether disclosing more detailed information about disease progression toterminally ill patients could improve the quality of communication. Methods: This was a before/after study of 91 consecutive terminal cancer patients. Based on the previous studies, we categorized cancer disclosure into 4 groups: A;‘‘non-disclosure’’, B;‘‘disclosure of cancer diagnosis’’, C;‘‘disclosureof life-threatening disease’’, and D;‘‘disclosure of poor prognosis’’. We disclosed more detailed information based on the SPIKES protocol and compared the scores of 3 communication items of Support Team Assessment Schedule (Japanese version) measured between at admission and one-week after this approach. Results: A, B, C and D groups included 8, 25, 40, and 18 cases, respectively. This approach to cancer disclosure was implemented in 37.5% of group A, 60% of group B, and 40% of group C. In group B, all 3 communications were significantly improved (2.40 + 0.51 vs 1.53 + 0.83, 1.93 + 0.96 vs 1.00 + 0.38, 2.13 + 0.64 vs 1.13 + 0.64; p ¼ 0.0035, 0.0062, 0.0013). In group C, all 3 communications were significantly improved (1.25 + 0.58 vs 0.81 + 0.66, 1.13 + 0.34 vs 0.69 + 0.48, 1.31+0.60 vs 0.56 + 0.63; p ¼ 0.020, 0.0082, 0.0057). Conclusions: This study revealed that disclosing more detailed information of cancer for terminally ill cancer patients contributed to improving the quality of communication, irrespective of the stage of disclosure. Keywords cancer, oncology, disclosure of cancer, terminal care, Support Team Assessment Schedule (STAS), communication
Purpose In order to provide high-quality cancer care services from the initial treatment for recurrence to the terminal phase, it is important for medical professionals to provide patients and their families with necessary information, including disease conditions, therapeutic measures, care procedures, and treatment plans, place emphasis on interactive communication with patients and their families, and allow them make decisions regarding treatment and care services based on mutual understanding.1,2 Open communication among patients, families, and medical professionals is becoming increasingly important in cancer treatment, and the disclosure of cancer diagnosis to patients has become common. However, the attitude toward and cultural background related to the disclosure of prognostic information varies among countries, regions, and facilities.2-8 We often encounter patients with advanced cancer who have marked distress by undergoing continuous chemotherapy, which is no
longer effective, and this causes unnecessary side effects, reduces the quality of life (QOL), and leads to late referrals to palliative care units (PCUs).9,10 Recently, many studies on early palliative care have been conducted,11-16 and its efficacy has been reported, such as improvement in the QOL. As Temel et al reported that communication is the most important palliative care intervention,
1
Department of Palliative Care, Asahikawa Medical University Hospital, Asahikawa, Hokkaido, Japan 2 Department of Surgery, Tenshi Hospital, Sapporo, Japan 3 Department of Psycho-Oncology, Saitama Medical University, Hidaka, Japan Corresponding Author: Nobuhisa Nakajima, MD, PhD, Department of Palliative Care, Asahikawa Medical University Hospital, 2-1-1-1 Midorigaoka-higashi, Asahikawa, Hokkaido 078-8510, Japan. Email: [email protected]
Downloaded from ajh.sagepub.com by guest on November 14, 2015
Nakajima et al
777
involvement with patients and families from the early stages of cancer treatment helps to create trusting relationships under favorable communication with them and facilitates discussions about end-of-life care.12,17 In their studies, early palliative care intervention showed significantly more favorable insight and QOL, with a better understanding of the patient’s serious disease condition through favorable communication and discussions about future directions of treatment among patients, families, and medical professionals. Therefore, chemotherapy could be discontinued when its effects were no longer expected,12,14 contributing to reducing late referrals to the PCU. Thus, effective and faithful communication between patients and medical professionals can improve patients’ QOL and is an essential and fundamental factor in cancer treatment. For patients with advanced cancer, the QOL is equivalent to the quality of death, which includes preparation for approaching death and acceptance of prognostic information and comprehensive care. These suggest that the quality of terminal care is influenced by the quality of communication.18-20 The process of cancer disclosure is categorized into several stages based on information given by physicians, such as ‘‘disclosure of cancer,’’ ‘‘disclosure of disease conditions,’’ and ‘‘disclosure of prognosis.’’21,22 In our previous study, we reported that the quality of terminal care was favorable if patients and their families were fully informed of the diseases.23 Thus, if disclosing more information about the cancer can improve the quality of communication with patients with terminal cancer, it may also contribute to improving the quality of terminal care.9,24,25 The purpose of this study was to examine whether or not disclosing detailed information about disease progression to patients with terminal cancer can improve the quality of communication among patients, families, and medical professionals.
Methods Patients One hundred and twenty-five patients with cancer were treated after the initial consultation and hospitalized to receive end-oflife care during the past 4 years at the Department of Surgery, Sapporo Social Insurance General Hospital (April 2004-March 2005) and Tenshi Hospital (April 2005-March 2008). In all, 91 patients were enrolled as participants, excluding 27 patients in whom continuous evaluation was not possible because they died within 2 weeks after hospitalization and 7 patients in whom evaluation was difficult due to delirium.
on cancer disclosure given by the primary physicians prior to the hospital admission, and the patients were divided into 4 groups. The group of nondisclosure of cancer diagnosis was a group of patients not disclosed of their diseases using the word ‘‘cancer’’ (A group). Physicians used ‘‘ulcer’’ or ‘‘precancerous lesion’’ instead of ‘‘cancer’’ for patients in this group to explain about their disease. Patients in the disclosure of cancer diagnosis group were informed of cancer, although explanations were not provided regarding recurrence or the possible progression of the disease (B group). Patients in the disclosure of life-threatening disease group received explanations of the diagnosis of advanced cancer, metastasis, and recurrence, and the fact that the disease could not be cured by any treatment (C group). Patients in the disclosure of poor prognosis group were told that they had a limited life expectancy (a few months or weeks; D group). The classification was based on the information provided for patients at the time of their final hospitalization to receive end-of-life care. In patients with terminal cancer, initial evaluation was performed regarding 3 communication items (between patient and family, between medical professionals, between patient, family, and medical professionals) of the Japanese version of the Support Team Assessment Schedule (STAS-J)26 within 3 days after hospital admission, and this was subsequently performed once a week according to its assessment criteria. After the initial evaluation, we tried to disclose more detailed information of cancer, with confirming how much the patients know about their disease and what kinds of information about the disease and prognosis they want to know, based on SPIKES’s approach to breaking bad news, that is, assessing the patient’s ‘‘Perception’’ and obtaining the patient’s ‘‘Invitation.’’1 We defined that the approach of disclosing more detailed information was providing patients with terminal cancer more detailed information about cancer disclosure, such as disclosing cancer diagnosis to the patients of A group, disclosing life-threatening disease to the patients of B group, and disclosing poor prognosis and limited life expectancy to the patients of C group. Scores for the 3 communication items of STAS-J measured before and 1 week after disclosing cancer information were compared.1,27 The following items were prospectively evaluated: 1.
2.
Comparison between the scores measured at the initial evaluation and those after intervention in patients disclosing more detailed information of cancer. Comparison between the scores measured at the initial evaluation and those of 1 week after this evaluation in patients not disclosing more detailed information of cancer.
Methods
The following is an outline of STAS-J and the reason for using STAS-J.
This was a before/after study. Based on references,21-23 the process of cancer disclosure was categorized into 4 stages as follows: (A) ‘‘nondisclosure of cancer diagnosis,’’ (B) ‘‘disclosure of cancer diagnosis,’’ (C) ‘‘disclosure of life-threatening disease,’’ and (D) ‘‘disclosure of poor prognosis.’’21-23 Regarding medical chart reviews, the multidisciplinary team collected information
An outline of STAS-J and the reason for using STAS-J. The STAS is a tool for clinical audit in the field of palliative care developed by Professor Irene Higginson in 1986.28,29 STAS was developed as an index to evaluate the appropriateness and validity of palliative care provided for patients and their families30,31 and is
Downloaded from ajh.sagepub.com by guest on November 14, 2015
American Journal of Hospice & Palliative Medicine® 32(7)
778 currently being used in palliative and general wards, home palliative care, and many other settings.32,33 As the most important feature, STAS has adopted the method of ‘‘evaluation from others (physicians, nurses, and other medical professionals).’’ Reviewing daily care for patients and their families at a regular basis, as a self-assessment activity, using STAS, will help ensure the quality of cancer care.28-34 The Japanese version of STAS (STAS-J) was developed in 2003.26 STAS-J consists of 9 assessment items, including 2 items of patients’ physical symptoms, 2 items of psychological state (anxiety), 2 items of recognition of disease conditions (insight), and 3 items of communication. These 3 items of communication are as follows: (1) ‘‘communication between patient and family’’; (2) ‘‘communication between medical professionals’’; and (3) ‘‘communication between patient/family and medical professionals.’’ STAS-J uses a 5-rank scale from 0: ‘‘least severe condition’’ to 4: ‘‘most severe condition.’’ Descriptions for each rank are provided to help evaluate care services. Many patients receiving palliative care start to have difficulties responding to self-administered questionnaires or interviews with the progression of the disease and aggravation of the condition. The purpose of palliative care is to provide holistic pain relief to both patients and their families. Since palliative care generally involves a team approach, it is necessary to evaluate whether the team is capable of providing patientcentered care. There are several useful scales for measuring QOL, such as European Organization for Research and Treatment of Cancer QLQ-C3035 and The Functional Assessment of Cancer Therapy scale,36 but we used STAS-J in this study because this was developed as a clinical audit tool in palliative care and met the purpose of our study.26,28,29
Statistical Analysis The Wilcoxon signed ranks test and Mann-Whitney U test were used for statistical analysis, and differences resulting in P values lower than .05 were considered significant. All analyses were performed using StatView 5.0 (Cary, North Carolina).
Ethical Consideration This study was approved by the institutional review board of the hospitals and conducted in accordance with the Declaration of Helsinki.
Results A, B, C, and D groups included 8, 25, 40, and 18 cases, respectively. Patients’ backgrounds were summarized in Table 1. There was no significant difference among in age, sex, admission period, and primary organ in each group. Among these 4 groups, the intervention was performed for A, B, and C groups, and the results of the evaluation using STAS-J were as follows (Table 2):
The approach of disclosing more detailed information was implemented in 37.5% (3 of 8) of A group, 60% (15 of 25) of B group, and 40% (16 of 40) of C group. The main reasons for not implementing it included ‘‘not wished for by patients,’’ ‘‘not wished for by families,’’ and ‘‘the decision of physicians,’’ and these reasons were observed in 0/4/1 of the patients in A group, 0/5/5 of the patients in B group, and 8/10/6 of the patients in C group, respectively. 1.
Comparison between the scores measured at the initial evaluation and those after intervention in patients disclosing more detailed information of cancer (Table 2).
Cancer diagnosis was disclosed to 3 (37.5%) patients in A group. In all patients, scores for communication between patients and families, between medical professionals, and between patients/families and medical professionals were not significantly improved. Sixteen (60%) patients in the B group were informed of the life-threatening diagnosis. This intervention significantly improved communication between patients and families, between medical professionals, and between patients/families and medical professionals (P ¼ .0035, P ¼ .0062, P ¼ .0013). Of the 40 patients in the C group, 16 (40%) wished to be informed of their prognosis. This intervention significantly improved communication between patients and families, between medical professionals, and between patients/families and medical professionals (P ¼ .020, P ¼ .0082, and P ¼ .0057). 2.
Comparison between the scores measured at the initial evaluation and those of 1 week after this evaluation in patients not disclosing more detailed information of cancer (Table 2).
No significant difference was observed between the initial evaluation scores and those of 1 week after initial evaluation in A group and B group. Scores for communication between patients and families deteriorated from 3 to 4 in 1 patient of A group. Scores for communication between patients and families and between patients/families and medical professionals deteriorated from 2 to 3 in 2 patients of B group. C group showed significant improvements in communication between medical professionals and between patients/families and medical professionals, although they did not receive prognostic information (P ¼ .0096 and P ¼ .0033).
Discussion To our knowledge, this is the first study to clarify the relationship between the approach of disclosing more detailed information of cancer for the patients with terminally ill cancer and the quality of communication during the terminal stages of cancer. We discuss the effects and problems of this intervention based on the stages of disclosure: nondisclosure of cancer diagnosis, disclosure of cancer diagnosis, and disclosure of lifethreatening disease. First of all, we will explain about the characteristics of terminal care in Japan. Compared with physicians in Western
Downloaded from ajh.sagepub.com by guest on November 14, 2015
Nakajima et al
779
Table 1. Patients’ Characteristics. A: patients not disclosed cancer diagnosis (n ¼ 8)
Group Age Sex (M/F) Admission period (last hospitalization), days Primary organ Stomach Colon and rectum Liver Bile duct and pancreas Breast
B: patients disclosed C: patients disclosed lifecancer diagnosis (n ¼ 25) threatening (n ¼ 40)
D: patients disclosed prognosis (n ¼ 18)
P value
70.5 + 10.6 3/5 35.5+18.0
72.8 + 11.8 13/12 30.5 + 16.2
66.3 + 12.8 22/18 28.1 + 15.5
62.5 + 9.8 8/10 30.8 + 13.8
.64 .71 .84
3 2 0 2 1
7 10 2 4 2
9 15 3 5 8
4 7 0 3 4
.93
Abbreviations: F, female; M, male.
Table 2. Change in the Scores of Communication Items of the STAS-J.a Communication between patients and family Before
After
P value
1. Group A: patients not disclosed cancer diagnosis Informed (3) 3.67 + 0.56 2.67 + 1.12 .1 Not informed (5) 3.40 + 0.55 3.60 + 0.55 >.99 2. Group B: patients disclosed cancer diagnosis Informed (15) 2.40 + 0.51 1.53 + 0.83 .0035 Not informed (10) 2.40 + 0.52 2.40 + 0.70 >.99 3. Group C: patients disclosed life-threatening diagnosis Informed (16) 1.25 + 0.58 0.81 + 0.66 .02 Not informed (24) 1.33 + 0.57 1.21 + 0.59 .083
Communication between medical professionals Before
After
1.67 + 0.58 1.60 + 0.55
1.00 + 0.00 1.40 + 0.55
1.93 + 0.96 2.10 + 0.94
1.00 + 0.38 1.90 + 0.88
1.13 + 0.34 1.08 + 0.28
0.69 + 0.48 0.79 + 0.28
P value
Communication between patients and family and medical professionals Before
After
4.00 + 0.00 4.00 + 0.00
2.33 + 0.58 3.80 + 0.45
.0062 .15
2.13 + 0.64 2.20 + 0.63
1.13 + 0.64 2.30 + 0.68
.0013 .56
.0082 .0096
1.31 + 0.60 1.29 + 0.62
0.56 + 0.63 0.92 + 0.65
.0057 .0033
.16 >.99
P value .1 >.99
a
Not informed: the ‘‘not informed’’ group was a group of patients to whom further information about cancer was not disclosed for the following reasons: patients did not wish to know further information about cancer; families did not wish the patient to be informed of further information; and primary physicians no longer agreed to disclose further information, although we tried to disclose detailed information about cancer based on SPIKES’s approach to breaking bad news, ‘‘Perception’’ and ‘‘Invitation.’’
countries, physicians in Eastern countries tended to avoid informing patients of the diagnosis of cancer, although this trend has become less apparent in recent years. In Japan as well, many hospitals specializing in cancer treatment including cancer centers began to disclose cancer diagnosis to patients.37-40 The Cancer Control Act was established in 2006 with the aim of improving the QOL of patients with cancer by increasing access to specialized palliative care service.41 This has increased the percentage of interventions by palliative care teams and improved the levels of satisfaction of patients and their families; however, the rate of late referrals to specialized palliative care services, such as PCUs, has not been improved.42 Delivering bad news, such as the discontinuation of anticancer treatment and transfer to specialized palliative care services, can be stressful for not only physicians in Western countries but also for those in Japan. Disclosing both cancer diagnosis and prognosis and discontinuing anticancer treatment with appropriate timing still remain challenging issues in Japan.43 The recent focal point is shifting from ‘‘Whether or not the diagnosis of cancer should be disclosed to patients’’ to ‘‘How to
disclose the diagnosis of cancer to patients.’’ A future issue in Japan is how to improve the quality of terminal care by strengthening systems to provide appropriate care and sufficient support after informing patients and families about the diagnosis of cancer.44-46 Since the revision of the Cancer Control Act in 2012, medical professionals have been actively trying to resolve this issue. Furthermore, medical professionals should focus on discussions with patients and families about how patients cope with the present issues and perform decision making. Of the 8 patients of nondisclosure of cancer diagnosis, only 3 patients were subsequently disclosed cancer diagnosis, because we did not have enough time to discuss the intervention with their families at the end of the patients’ lives. Physicians are sometimes asked not to disclose the diagnosis of cancer to patients by their families. Patients often undergo cancer treatment without ‘‘being disclosed of their disease.’’ In such cases, physicians sometimes use the words ‘‘ulcer’’ or ‘‘precancerous lesion’’ instead of informing them of the diagnosis of ‘‘cancer.’’47-49 Therefore, in order to disclose cancer diagnosis and disease conditions, it is necessary to fully discuss
Downloaded from ajh.sagepub.com by guest on November 14, 2015
American Journal of Hospice & Palliative Medicine® 32(7)
780 with families how patients will spend the rest of their lives, from the early stages of cancer treatment and care.14,20 Of the 25 patients who were disclosed of their cancer diagnosis, 15 were subsequently disclosed life-threatening disease and limited life expectancy. In these patients, significant improvements were observed in scores for communication between patients and families, between medical professionals, and between patients/families and medical professionals. Thus, the results indicate the significance of conducting this approach of disclosing more detailed information of cancer for patients with terminal cancer. Some of the patients who did not undergo the approach of disclosing more detailed information of cancer showed score deterioration. In 1 patient not disclosed cancer diagnosis, the score for communication between the patient and family deteriorated from 3 to 4. In 2 patients who were disclosed of their cancer diagnosis, scores for communication between the patients and their families and between patients/families and medical professionals deteriorated from 2 to 3. We first considered to perform the approach of disclosing more detailed information of cancer for these patients, but it was difficult because of shortage of time for intervention. To overcome the problems, it is necessary to enrich the communication skills training for medical professionals, as well as secure enough time to perform the intervention. Well-planned interventions must be performed from the early stages of cancer treatment.19 Of the 40 patients who were disclosed the life-threatening disease, prognostic information was carefully disclosed to 16 patients, who wished to receive it. As a result, scores for communication between patients and families, between medical professionals, and between patients/families and medical professionals were significantly improved. On the other hand, patients who refused to receive prognostic information also showed significant improvements in the quality of the communication between medical professionals and between patients/ families and medical professionals. These results suggest that prognostic information should be provided based on patients’ wishes if they fully understand their disease conditions, and it is possible to realize effective communication irrespective of the provision of prognostic information.
Limitations of the Study This study has a few limitations. First, this was the first study to investigate the effects of disclosing more detailed information about cancer on the quality of communication. It is necessary to conduct further multicenter prospective studies to obtain clear findings. Second, researchers were members of the multidisciplinary team including physicians and nurses, so this may have affected the results of the evaluation of communication. This must be taken into consideration in the results. Third, 5 patients with delirium were excluded from this study. However, it is difficult to exclude all cases involving delirium prior to conducting an analysis because the prevalence of delirium is 28% to 42% in the terminal phase50 and nonagitated delirium can be
overlooked.51 Since some of the patients of this study might also have had this type of delirium, it is necessary to review the results of the study while taking into consideration such influence. Finally, we performed a screening test to detect depression at the time of hospital admission, but we cannot deny the possibility of including patients who could not be fully assessed because their time was limited due to terminal cancer. Depression may affect the evaluation of communication between patients and families and between patients/families and medical professionals. This must be taken into consideration in the results.
Conclusions This study revealed that the approach of disclosing more detailed information of cancer for the patients with terminally ill cancer contributed to improving the quality of communication, irrespective of the stage of disclosure. It is expected that the quality of communication with patients with terminal cancer will be improved by actively promoting the disclosure of changes in physical conditions and information sharing between patients, families, and medical professionals based on the findings obtained in this study. We must conduct further studies to verify these findings. Declaration of Conflicting Interests The author(s) declared no potential conflicts of interest with respect to the research, authorship, and/or publication of this article.
Funding The author(s) received no financial support for the research, authorship, and/or publication of this article.
References 1. Baile WF, Buckman R, Lenzi R, Glober G, Beale EA, Kudelka AP. SPIKES—a six-step protocol for delivering bad news: application to the patient with cancer. Oncologist. 2000;5(4):302-311. 2. Lee RG, Garvin T. Moving from information transfer to information exchange in health and health care. Soc Sci Med. 2003;56(3): 449-464. 3. Takayama T, Yamazaki, Katsumata N. Relationship between outpatients’ perceptions of physicians’ communication styles and patients’ anxiety levels in a Japanese oncology setting. Soc Sci Med. 2001;53(10):1335-1350. 4. Thomsen OO, Wulff HR, Martin A, Singer PA. What do gastroenterologists in Europe tell cancer patients? Lancet. 1993; 341(8843):473-476. 5. Loge JH, Kaasa S, Ekeberg O, Falkum E, Hytten K. Attitudes toward informing the cancer patient—a survey of Norwegian physicians. Eur J Cancer. 1996;32A(8):1344-1348. 6. Innes S, Payne S. Advanced cancer patients’ prognostic information preferences: a review. Palliat Med. 2009;23(1):29-39. 7. Voorhees J, Rietjens J, Onwuteaka-Philipsen B, et al. Discussing prognosis with terminally ill cancer patients and relatives: a survey of physicians’ intentions in seven countries. Patient Educ Couns. 2009;77(3):430-436.
Downloaded from ajh.sagepub.com by guest on November 14, 2015
Nakajima et al
781
8. Kazdaglis GA, Arnaoutoglou C, Karypidis D, et al. Disclosing the truth to terminal cancer patients: a discussion of ethical and cultural issues. East Mediterr Health J. 2010;16(4):442-447. 9. Kadakia KC, Moynihan TJ, Smith TJ, Loprinzi CL. Palliative communications: addressing chemotherapy in patients with advanced cancer. Ann Oncol. 2012;23(suppl 3):29-32. 10. Morita T, Akechi T, Ikenaga M, et al. Late referrals to specialized palliative care service in Japan. J Clin Oncol. 2005;23(12): 2637-2644. 11. Temel JS, Greer JA, Admane S, et al. Longitudinal perceptions of prognosis and goals of therapy in patients with metastatic non-small-cell lung cancer: results of a randomized study of early palliative care. J Clin Oncol. 2011;29(17):2319-2326. 12. Temel JS, Greer JA, Muzikansky A, et al. Early palliative care for patients with metastatic non-small-cell lung cancer. N Engl J Med. 2010;363(8):733-742. 13. Yoong J, Park ER, Greer JA, et al. Early palliative care in advanced lung cancer: a qualitative study. JAMA Intern Med. 2013;173(4):283-290. 14. Greer JA, Pirl WF, Jackson VA, et al. Effect of early palliative care on chemotherapy use and end-of-life care in patients with metastatic non-small-cell lung cancer. J Clin Oncol. 2012;30(4):394-400. 15. Zimmermann C, Swami N, Krzyzanowska M, et al. Early palliative care for patients with advanced cancer: a cluster-randomised controlled trial. Lancet. 2014;383(9930):1721-1730. doi:10.1016/ S0140-6736(13)62416-2. 16. Hui D, Kim SH, Roquemore J, et al. Impact of timing and setting of palliative care referral on quality of end-of-life care in cancer patients. Cancer. 2014;120(11):1743-1749. 17. Jacobsen J, Jackson V, Dahlin C, et al. Components of early outpatient palliative care consultation in patients with metastatic non-small cell lung cancer. J Palliat Med. 2011;14(4):459-464. 18. Fouquet C, Bredart A, Bouleuc C. Coping among patients with advanced cancer and medical communication. Bull Cancer. 2013;100(9):887-895. 19. Finlay E, Casarett D. Making difficult discussions easier: using prognosis to facilitate transitions to hospice. CA Cancer J Clin. 2009;59(4):250-263. 20. Morita T, Akechi T, Ikenaga M, et al. Communication about the ending of anticancer treatment and transition to palliative care. Ann Oncol. 2004;15(10):1551-1557. 21. Hancock K, Clayton JM, Parker SM, et al. Truth-telling in discussing prognosis in advanced life-limiting illnesses: a systematic review. Palliat Med. 2007;21(6):507-517. 22. Innes S, Payne S. Advanced cancer patient’ prognostic information preference: a review. Palliat Med. 2009;23(1):29-39. 23. Nakajima N, Hata Y, Onishi H, et al. The evaluation of the relationship between the level of disclosure of cancer in terminally ill patients with cancer and the quality of terminal care in these patients and their families using the Support Team Assessment Schedule. Am J Hosp Palliat Med. 2013;30(4):370-376. 24. Fumis RR, De Camargo B, Dei Giglio A. Physician, patient and family attitudes regarding information on prognosis: a Brazilian survey. Ann Oncol. 2012;23(1):205-211. 25. Daugherty CK, Hlubocky FJ. What are terminally ill cancer patients told about their expected deaths? A study of cancer
26.
27.
28.
29. 30.
31.
32.
33.
34.
35.
36.
37. 38.
39. 40.
41.
42. 43.
physicians’ self-reports of prognosis disclosure. J Clin Oncol. 2008;26(36):5988-5933. Miyashita M, Matoba K, Sasahara T, et al. Reliability and validity of Japanese version STAS (STAS-J). Palliat Support Care. 2004; 2(4):379-384. Jacobsen J, Jackson VA. A communication approach for oncologists: understanding patient coping and communicating about bad news, palliative care, and hospice. J Natl Compr Canc Netw. 2009:7(4):475-480. Higginson IJ. Clinical audit in palliative care. In: Higginson IJ, ed. Clinical Audit in Palliative Care. Oxford: Radcliffe Medical Press; 1993:8-15. Higginson IJ. Clinical audit and organizational audit in palliative care. Cancer Surv. 1994;21:233-245. Higginson IJ, McCarthy M. Validity of the support team assessment schedule: do staffs’ ratings reflect those made by patients or their families? Palliat Med. 1993;7(3):219-228. Higginson IJ, McCarthy M. A comparison of two measures of quality of life: their sensitivity and validity for patients with advanced cancer. Palliat Med. 1994;8(4):282-290. Edmonnds PM, Stuttaford JM, Penny J, et al. Do hospital palliative care teams improve symptom control? Use of a modified STAS as an evaluation tool. Palliat Med. 1998;12(5): 345-351. Lo RS, Ding A, Chung T, et al. Prospective study of symptom control in 133 cases of palliative care. Palliat Med. 1999;13(4): 335-340. Higginson IJ. Clinical audit and organizational audit in palliative care. In: Field D, Clark D, Corner J, et al, eds. Researching Palliative Care. Buckingham: Open University Press; 2001:170-183. Aaronson NK, Ahmedzai S, Bergman B, et al. The European Organization for Research and Treatment of Cancer QLQ-C30: a quality-of-life instrument for use in international clinical trials in oncology. J Natl Cancer Inst. 1993;85(5):365-376. Cella DF, Tulsky DS, Gray G, et al. The Functional Assessment of Cancer Therapy (FACT) scale; development and validation of the general measure. J Clin Oncol. 1993;11(5):570-579. Wang SY, Chen CH, Chen YS, Huang HL. The attitude toward truth telling of cancer in Taiwan. J Psychosom Res. 2004;57(1):53-58. Li JY, Zou LQ, Huang MJ, et al. To tell or not to tell: attitudes of Chinese oncology nurses towards truth telling of cancer diagnosis. J Clin Nursing. 2008;17(18):2463-2470. Ghavamzadeh A, Bahar B. Communication with the cancer patient in Iran. Ann N Y Acad Sci. 1997;809:261-265. Ozdogan M, Samur M, Artec M, Yildiz M, Savas B, Bozcuk HS. Factors related to truth-telling practice of physicians treating patients with cancer in Turkey. J Palliat Med. 2006;9(5):1114-1119. Overview of the ‘‘Cancer Control Act’’. Web site. http://www. mhlw.go.jp/english/wp/wp-hw3/dl/2-007.pdf#search¼’cancerþ controlþactþjapan’ accessed May 8, 2013. Morita T, Fujimoto K, Tei Y. Palliative care team: the first year audit in Japan. J Pain Symptom Manage. 2005;29(5):458-465. Morita T, Miyashita M, Tsuneto S, Sato K, Shima Y. Late referrals to palliative care units in Japan: nationwide follow-up survey and effects of palliative care team involvement after the Cancer Control Act. J Pain Symptom Manage. 2009;38(2):191-196.
Downloaded from ajh.sagepub.com by guest on November 14, 2015
American Journal of Hospice & Palliative Medicine® 32(7)
782 44. Miyashita M, Morita T, Hirai K. Evaluation of end-of-life cancer care from the perspective of bereaved family members: the Japanese experience. J Clin Oncol. 2008;26(23):3845-3852. 45. Marc Ho ZJ, Krishna LK, Goh C, et al. The physician–patient relationship in treatment decision making at the end of life: a pilot study of cancer patients in a Southeast Asian Society. Palliat Support Care. 2013;11(1):13-19. 46. Chiu TY, Hu WY, Huang HL, et al. Prevailing ethical dilemmas in terminal care for patients with cancer in Taiwan. J Clin Oncol. 2009;27(24):3964-3968. 47. Akabayashi A, Fetters MD, Elwyn TS. Family consent, communication, and advance directives for cancer disclosure: a Japanese case and discussion. J Med Ethics. 1999;25(4):296-301.
48. Uchitomi Y, Yamawaki S. Truth-telling practice in cancer care in Japan. In: Surbone A, Zwitter M, eds. Communication With the Cancer Patient. Information & Truth. New York: The New York Academy of Sciences; 1997:290-299. 49. Porter LS, Keefe FJ, Hurwitz H, Faber M. Disclosure between patients with gastrointestinal cancer and their spouses. Psychooncology. 2005;14(12):1030-1042. 50. Lawlor PG, Fainsinger RL, Bruera ED. Delirium at the end of life: critical issues in clinical practice and research. JAMA. 2000; 284(19):2427-2429. 51. Wada T, Wada M, Wada M, et al. Characteristics, interventions, and outcomes of misdiagnosed delirium in cancer patients. Palliat Support Care. 2010;8(2):125-131.
Downloaded from ajh.sagepub.com by guest on November 14, 2015
Does the Approach of Disclosing More Detailed Information of Cancer for the Terminally Ill Patients Improve the Quality of Communication Involving Patients, Families, and Medical Professionals?
American Journal of Hospice & Palliative Medicine® 2015, Vol. 32(7) 776-782 ª The Author(s) 2014 Reprints and permission: sagepub.com/journalsPermissions.nav DOI: 10.1177/1049909114548718 ajhpm.sagepub.com
Nobuhisa Nakajima, MD, PhD1, Kenju Kusumoto, MD, PhD2, Hideki Onishi, MD, PhD3, and Mayumi Ishida, CP, PhD3
Abstract Purpose: Effective and faithful communication between patients and medical professionals could improve patients’ quality of life and is an essential and fundamental factor in cancer treatment. The purpose of this study was to examine whether disclosing more detailed information about disease progression toterminally ill patients could improve the quality of communication. Methods: This was a before/after study of 91 consecutive terminal cancer patients. Based on the previous studies, we categorized cancer disclosure into 4 groups: A;‘‘non-disclosure’’, B;‘‘disclosure of cancer diagnosis’’, C;‘‘disclosureof life-threatening disease’’, and D;‘‘disclosure of poor prognosis’’. We disclosed more detailed information based on the SPIKES protocol and compared the scores of 3 communication items of Support Team Assessment Schedule (Japanese version) measured between at admission and one-week after this approach. Results: A, B, C and D groups included 8, 25, 40, and 18 cases, respectively. This approach to cancer disclosure was implemented in 37.5% of group A, 60% of group B, and 40% of group C. In group B, all 3 communications were significantly improved (2.40 + 0.51 vs 1.53 + 0.83, 1.93 + 0.96 vs 1.00 + 0.38, 2.13 + 0.64 vs 1.13 + 0.64; p ¼ 0.0035, 0.0062, 0.0013). In group C, all 3 communications were significantly improved (1.25 + 0.58 vs 0.81 + 0.66, 1.13 + 0.34 vs 0.69 + 0.48, 1.31+0.60 vs 0.56 + 0.63; p ¼ 0.020, 0.0082, 0.0057). Conclusions: This study revealed that disclosing more detailed information of cancer for terminally ill cancer patients contributed to improving the quality of communication, irrespective of the stage of disclosure. Keywords cancer, oncology, disclosure of cancer, terminal care, Support Team Assessment Schedule (STAS), communication
Purpose In order to provide high-quality cancer care services from the initial treatment for recurrence to the terminal phase, it is important for medical professionals to provide patients and their families with necessary information, including disease conditions, therapeutic measures, care procedures, and treatment plans, place emphasis on interactive communication with patients and their families, and allow them make decisions regarding treatment and care services based on mutual understanding.1,2 Open communication among patients, families, and medical professionals is becoming increasingly important in cancer treatment, and the disclosure of cancer diagnosis to patients has become common. However, the attitude toward and cultural background related to the disclosure of prognostic information varies among countries, regions, and facilities.2-8 We often encounter patients with advanced cancer who have marked distress by undergoing continuous chemotherapy, which is no
longer effective, and this causes unnecessary side effects, reduces the quality of life (QOL), and leads to late referrals to palliative care units (PCUs).9,10 Recently, many studies on early palliative care have been conducted,11-16 and its efficacy has been reported, such as improvement in the QOL. As Temel et al reported that communication is the most important palliative care intervention,
1
Department of Palliative Care, Asahikawa Medical University Hospital, Asahikawa, Hokkaido, Japan 2 Department of Surgery, Tenshi Hospital, Sapporo, Japan 3 Department of Psycho-Oncology, Saitama Medical University, Hidaka, Japan Corresponding Author: Nobuhisa Nakajima, MD, PhD, Department of Palliative Care, Asahikawa Medical University Hospital, 2-1-1-1 Midorigaoka-higashi, Asahikawa, Hokkaido 078-8510, Japan. Email: [email protected]
Downloaded from ajh.sagepub.com by guest on November 14, 2015
Nakajima et al
777
involvement with patients and families from the early stages of cancer treatment helps to create trusting relationships under favorable communication with them and facilitates discussions about end-of-life care.12,17 In their studies, early palliative care intervention showed significantly more favorable insight and QOL, with a better understanding of the patient’s serious disease condition through favorable communication and discussions about future directions of treatment among patients, families, and medical professionals. Therefore, chemotherapy could be discontinued when its effects were no longer expected,12,14 contributing to reducing late referrals to the PCU. Thus, effective and faithful communication between patients and medical professionals can improve patients’ QOL and is an essential and fundamental factor in cancer treatment. For patients with advanced cancer, the QOL is equivalent to the quality of death, which includes preparation for approaching death and acceptance of prognostic information and comprehensive care. These suggest that the quality of terminal care is influenced by the quality of communication.18-20 The process of cancer disclosure is categorized into several stages based on information given by physicians, such as ‘‘disclosure of cancer,’’ ‘‘disclosure of disease conditions,’’ and ‘‘disclosure of prognosis.’’21,22 In our previous study, we reported that the quality of terminal care was favorable if patients and their families were fully informed of the diseases.23 Thus, if disclosing more information about the cancer can improve the quality of communication with patients with terminal cancer, it may also contribute to improving the quality of terminal care.9,24,25 The purpose of this study was to examine whether or not disclosing detailed information about disease progression to patients with terminal cancer can improve the quality of communication among patients, families, and medical professionals.
Methods Patients One hundred and twenty-five patients with cancer were treated after the initial consultation and hospitalized to receive end-oflife care during the past 4 years at the Department of Surgery, Sapporo Social Insurance General Hospital (April 2004-March 2005) and Tenshi Hospital (April 2005-March 2008). In all, 91 patients were enrolled as participants, excluding 27 patients in whom continuous evaluation was not possible because they died within 2 weeks after hospitalization and 7 patients in whom evaluation was difficult due to delirium.
on cancer disclosure given by the primary physicians prior to the hospital admission, and the patients were divided into 4 groups. The group of nondisclosure of cancer diagnosis was a group of patients not disclosed of their diseases using the word ‘‘cancer’’ (A group). Physicians used ‘‘ulcer’’ or ‘‘precancerous lesion’’ instead of ‘‘cancer’’ for patients in this group to explain about their disease. Patients in the disclosure of cancer diagnosis group were informed of cancer, although explanations were not provided regarding recurrence or the possible progression of the disease (B group). Patients in the disclosure of life-threatening disease group received explanations of the diagnosis of advanced cancer, metastasis, and recurrence, and the fact that the disease could not be cured by any treatment (C group). Patients in the disclosure of poor prognosis group were told that they had a limited life expectancy (a few months or weeks; D group). The classification was based on the information provided for patients at the time of their final hospitalization to receive end-of-life care. In patients with terminal cancer, initial evaluation was performed regarding 3 communication items (between patient and family, between medical professionals, between patient, family, and medical professionals) of the Japanese version of the Support Team Assessment Schedule (STAS-J)26 within 3 days after hospital admission, and this was subsequently performed once a week according to its assessment criteria. After the initial evaluation, we tried to disclose more detailed information of cancer, with confirming how much the patients know about their disease and what kinds of information about the disease and prognosis they want to know, based on SPIKES’s approach to breaking bad news, that is, assessing the patient’s ‘‘Perception’’ and obtaining the patient’s ‘‘Invitation.’’1 We defined that the approach of disclosing more detailed information was providing patients with terminal cancer more detailed information about cancer disclosure, such as disclosing cancer diagnosis to the patients of A group, disclosing life-threatening disease to the patients of B group, and disclosing poor prognosis and limited life expectancy to the patients of C group. Scores for the 3 communication items of STAS-J measured before and 1 week after disclosing cancer information were compared.1,27 The following items were prospectively evaluated: 1.
2.
Comparison between the scores measured at the initial evaluation and those after intervention in patients disclosing more detailed information of cancer. Comparison between the scores measured at the initial evaluation and those of 1 week after this evaluation in patients not disclosing more detailed information of cancer.
Methods
The following is an outline of STAS-J and the reason for using STAS-J.
This was a before/after study. Based on references,21-23 the process of cancer disclosure was categorized into 4 stages as follows: (A) ‘‘nondisclosure of cancer diagnosis,’’ (B) ‘‘disclosure of cancer diagnosis,’’ (C) ‘‘disclosure of life-threatening disease,’’ and (D) ‘‘disclosure of poor prognosis.’’21-23 Regarding medical chart reviews, the multidisciplinary team collected information
An outline of STAS-J and the reason for using STAS-J. The STAS is a tool for clinical audit in the field of palliative care developed by Professor Irene Higginson in 1986.28,29 STAS was developed as an index to evaluate the appropriateness and validity of palliative care provided for patients and their families30,31 and is
Downloaded from ajh.sagepub.com by guest on November 14, 2015
American Journal of Hospice & Palliative Medicine® 32(7)
778 currently being used in palliative and general wards, home palliative care, and many other settings.32,33 As the most important feature, STAS has adopted the method of ‘‘evaluation from others (physicians, nurses, and other medical professionals).’’ Reviewing daily care for patients and their families at a regular basis, as a self-assessment activity, using STAS, will help ensure the quality of cancer care.28-34 The Japanese version of STAS (STAS-J) was developed in 2003.26 STAS-J consists of 9 assessment items, including 2 items of patients’ physical symptoms, 2 items of psychological state (anxiety), 2 items of recognition of disease conditions (insight), and 3 items of communication. These 3 items of communication are as follows: (1) ‘‘communication between patient and family’’; (2) ‘‘communication between medical professionals’’; and (3) ‘‘communication between patient/family and medical professionals.’’ STAS-J uses a 5-rank scale from 0: ‘‘least severe condition’’ to 4: ‘‘most severe condition.’’ Descriptions for each rank are provided to help evaluate care services. Many patients receiving palliative care start to have difficulties responding to self-administered questionnaires or interviews with the progression of the disease and aggravation of the condition. The purpose of palliative care is to provide holistic pain relief to both patients and their families. Since palliative care generally involves a team approach, it is necessary to evaluate whether the team is capable of providing patientcentered care. There are several useful scales for measuring QOL, such as European Organization for Research and Treatment of Cancer QLQ-C3035 and The Functional Assessment of Cancer Therapy scale,36 but we used STAS-J in this study because this was developed as a clinical audit tool in palliative care and met the purpose of our study.26,28,29
Statistical Analysis The Wilcoxon signed ranks test and Mann-Whitney U test were used for statistical analysis, and differences resulting in P values lower than .05 were considered significant. All analyses were performed using StatView 5.0 (Cary, North Carolina).
Ethical Consideration This study was approved by the institutional review board of the hospitals and conducted in accordance with the Declaration of Helsinki.
Results A, B, C, and D groups included 8, 25, 40, and 18 cases, respectively. Patients’ backgrounds were summarized in Table 1. There was no significant difference among in age, sex, admission period, and primary organ in each group. Among these 4 groups, the intervention was performed for A, B, and C groups, and the results of the evaluation using STAS-J were as follows (Table 2):
The approach of disclosing more detailed information was implemented in 37.5% (3 of 8) of A group, 60% (15 of 25) of B group, and 40% (16 of 40) of C group. The main reasons for not implementing it included ‘‘not wished for by patients,’’ ‘‘not wished for by families,’’ and ‘‘the decision of physicians,’’ and these reasons were observed in 0/4/1 of the patients in A group, 0/5/5 of the patients in B group, and 8/10/6 of the patients in C group, respectively. 1.
Comparison between the scores measured at the initial evaluation and those after intervention in patients disclosing more detailed information of cancer (Table 2).
Cancer diagnosis was disclosed to 3 (37.5%) patients in A group. In all patients, scores for communication between patients and families, between medical professionals, and between patients/families and medical professionals were not significantly improved. Sixteen (60%) patients in the B group were informed of the life-threatening diagnosis. This intervention significantly improved communication between patients and families, between medical professionals, and between patients/families and medical professionals (P ¼ .0035, P ¼ .0062, P ¼ .0013). Of the 40 patients in the C group, 16 (40%) wished to be informed of their prognosis. This intervention significantly improved communication between patients and families, between medical professionals, and between patients/families and medical professionals (P ¼ .020, P ¼ .0082, and P ¼ .0057). 2.
Comparison between the scores measured at the initial evaluation and those of 1 week after this evaluation in patients not disclosing more detailed information of cancer (Table 2).
No significant difference was observed between the initial evaluation scores and those of 1 week after initial evaluation in A group and B group. Scores for communication between patients and families deteriorated from 3 to 4 in 1 patient of A group. Scores for communication between patients and families and between patients/families and medical professionals deteriorated from 2 to 3 in 2 patients of B group. C group showed significant improvements in communication between medical professionals and between patients/families and medical professionals, although they did not receive prognostic information (P ¼ .0096 and P ¼ .0033).
Discussion To our knowledge, this is the first study to clarify the relationship between the approach of disclosing more detailed information of cancer for the patients with terminally ill cancer and the quality of communication during the terminal stages of cancer. We discuss the effects and problems of this intervention based on the stages of disclosure: nondisclosure of cancer diagnosis, disclosure of cancer diagnosis, and disclosure of lifethreatening disease. First of all, we will explain about the characteristics of terminal care in Japan. Compared with physicians in Western
Downloaded from ajh.sagepub.com by guest on November 14, 2015
Nakajima et al
779
Table 1. Patients’ Characteristics. A: patients not disclosed cancer diagnosis (n ¼ 8)
Group Age Sex (M/F) Admission period (last hospitalization), days Primary organ Stomach Colon and rectum Liver Bile duct and pancreas Breast
B: patients disclosed C: patients disclosed lifecancer diagnosis (n ¼ 25) threatening (n ¼ 40)
D: patients disclosed prognosis (n ¼ 18)
P value
70.5 + 10.6 3/5 35.5+18.0
72.8 + 11.8 13/12 30.5 + 16.2
66.3 + 12.8 22/18 28.1 + 15.5
62.5 + 9.8 8/10 30.8 + 13.8
.64 .71 .84
3 2 0 2 1
7 10 2 4 2
9 15 3 5 8
4 7 0 3 4
.93
Abbreviations: F, female; M, male.
Table 2. Change in the Scores of Communication Items of the STAS-J.a Communication between patients and family Before
After
P value
1. Group A: patients not disclosed cancer diagnosis Informed (3) 3.67 + 0.56 2.67 + 1.12 .1 Not informed (5) 3.40 + 0.55 3.60 + 0.55 >.99 2. Group B: patients disclosed cancer diagnosis Informed (15) 2.40 + 0.51 1.53 + 0.83 .0035 Not informed (10) 2.40 + 0.52 2.40 + 0.70 >.99 3. Group C: patients disclosed life-threatening diagnosis Informed (16) 1.25 + 0.58 0.81 + 0.66 .02 Not informed (24) 1.33 + 0.57 1.21 + 0.59 .083
Communication between medical professionals Before
After
1.67 + 0.58 1.60 + 0.55
1.00 + 0.00 1.40 + 0.55
1.93 + 0.96 2.10 + 0.94
1.00 + 0.38 1.90 + 0.88
1.13 + 0.34 1.08 + 0.28
0.69 + 0.48 0.79 + 0.28
P value
Communication between patients and family and medical professionals Before
After
4.00 + 0.00 4.00 + 0.00
2.33 + 0.58 3.80 + 0.45
.0062 .15
2.13 + 0.64 2.20 + 0.63
1.13 + 0.64 2.30 + 0.68
.0013 .56
.0082 .0096
1.31 + 0.60 1.29 + 0.62
0.56 + 0.63 0.92 + 0.65
.0057 .0033
.16 >.99
P value .1 >.99
a
Not informed: the ‘‘not informed’’ group was a group of patients to whom further information about cancer was not disclosed for the following reasons: patients did not wish to know further information about cancer; families did not wish the patient to be informed of further information; and primary physicians no longer agreed to disclose further information, although we tried to disclose detailed information about cancer based on SPIKES’s approach to breaking bad news, ‘‘Perception’’ and ‘‘Invitation.’’
countries, physicians in Eastern countries tended to avoid informing patients of the diagnosis of cancer, although this trend has become less apparent in recent years. In Japan as well, many hospitals specializing in cancer treatment including cancer centers began to disclose cancer diagnosis to patients.37-40 The Cancer Control Act was established in 2006 with the aim of improving the QOL of patients with cancer by increasing access to specialized palliative care service.41 This has increased the percentage of interventions by palliative care teams and improved the levels of satisfaction of patients and their families; however, the rate of late referrals to specialized palliative care services, such as PCUs, has not been improved.42 Delivering bad news, such as the discontinuation of anticancer treatment and transfer to specialized palliative care services, can be stressful for not only physicians in Western countries but also for those in Japan. Disclosing both cancer diagnosis and prognosis and discontinuing anticancer treatment with appropriate timing still remain challenging issues in Japan.43 The recent focal point is shifting from ‘‘Whether or not the diagnosis of cancer should be disclosed to patients’’ to ‘‘How to
disclose the diagnosis of cancer to patients.’’ A future issue in Japan is how to improve the quality of terminal care by strengthening systems to provide appropriate care and sufficient support after informing patients and families about the diagnosis of cancer.44-46 Since the revision of the Cancer Control Act in 2012, medical professionals have been actively trying to resolve this issue. Furthermore, medical professionals should focus on discussions with patients and families about how patients cope with the present issues and perform decision making. Of the 8 patients of nondisclosure of cancer diagnosis, only 3 patients were subsequently disclosed cancer diagnosis, because we did not have enough time to discuss the intervention with their families at the end of the patients’ lives. Physicians are sometimes asked not to disclose the diagnosis of cancer to patients by their families. Patients often undergo cancer treatment without ‘‘being disclosed of their disease.’’ In such cases, physicians sometimes use the words ‘‘ulcer’’ or ‘‘precancerous lesion’’ instead of informing them of the diagnosis of ‘‘cancer.’’47-49 Therefore, in order to disclose cancer diagnosis and disease conditions, it is necessary to fully discuss
Downloaded from ajh.sagepub.com by guest on November 14, 2015
American Journal of Hospice & Palliative Medicine® 32(7)
780 with families how patients will spend the rest of their lives, from the early stages of cancer treatment and care.14,20 Of the 25 patients who were disclosed of their cancer diagnosis, 15 were subsequently disclosed life-threatening disease and limited life expectancy. In these patients, significant improvements were observed in scores for communication between patients and families, between medical professionals, and between patients/families and medical professionals. Thus, the results indicate the significance of conducting this approach of disclosing more detailed information of cancer for patients with terminal cancer. Some of the patients who did not undergo the approach of disclosing more detailed information of cancer showed score deterioration. In 1 patient not disclosed cancer diagnosis, the score for communication between the patient and family deteriorated from 3 to 4. In 2 patients who were disclosed of their cancer diagnosis, scores for communication between the patients and their families and between patients/families and medical professionals deteriorated from 2 to 3. We first considered to perform the approach of disclosing more detailed information of cancer for these patients, but it was difficult because of shortage of time for intervention. To overcome the problems, it is necessary to enrich the communication skills training for medical professionals, as well as secure enough time to perform the intervention. Well-planned interventions must be performed from the early stages of cancer treatment.19 Of the 40 patients who were disclosed the life-threatening disease, prognostic information was carefully disclosed to 16 patients, who wished to receive it. As a result, scores for communication between patients and families, between medical professionals, and between patients/families and medical professionals were significantly improved. On the other hand, patients who refused to receive prognostic information also showed significant improvements in the quality of the communication between medical professionals and between patients/ families and medical professionals. These results suggest that prognostic information should be provided based on patients’ wishes if they fully understand their disease conditions, and it is possible to realize effective communication irrespective of the provision of prognostic information.
Limitations of the Study This study has a few limitations. First, this was the first study to investigate the effects of disclosing more detailed information about cancer on the quality of communication. It is necessary to conduct further multicenter prospective studies to obtain clear findings. Second, researchers were members of the multidisciplinary team including physicians and nurses, so this may have affected the results of the evaluation of communication. This must be taken into consideration in the results. Third, 5 patients with delirium were excluded from this study. However, it is difficult to exclude all cases involving delirium prior to conducting an analysis because the prevalence of delirium is 28% to 42% in the terminal phase50 and nonagitated delirium can be
overlooked.51 Since some of the patients of this study might also have had this type of delirium, it is necessary to review the results of the study while taking into consideration such influence. Finally, we performed a screening test to detect depression at the time of hospital admission, but we cannot deny the possibility of including patients who could not be fully assessed because their time was limited due to terminal cancer. Depression may affect the evaluation of communication between patients and families and between patients/families and medical professionals. This must be taken into consideration in the results.
Conclusions This study revealed that the approach of disclosing more detailed information of cancer for the patients with terminally ill cancer contributed to improving the quality of communication, irrespective of the stage of disclosure. It is expected that the quality of communication with patients with terminal cancer will be improved by actively promoting the disclosure of changes in physical conditions and information sharing between patients, families, and medical professionals based on the findings obtained in this study. We must conduct further studies to verify these findings. Declaration of Conflicting Interests The author(s) declared no potential conflicts of interest with respect to the research, authorship, and/or publication of this article.
Funding The author(s) received no financial support for the research, authorship, and/or publication of this article.
References 1. Baile WF, Buckman R, Lenzi R, Glober G, Beale EA, Kudelka AP. SPIKES—a six-step protocol for delivering bad news: application to the patient with cancer. Oncologist. 2000;5(4):302-311. 2. Lee RG, Garvin T. Moving from information transfer to information exchange in health and health care. Soc Sci Med. 2003;56(3): 449-464. 3. Takayama T, Yamazaki, Katsumata N. Relationship between outpatients’ perceptions of physicians’ communication styles and patients’ anxiety levels in a Japanese oncology setting. Soc Sci Med. 2001;53(10):1335-1350. 4. Thomsen OO, Wulff HR, Martin A, Singer PA. What do gastroenterologists in Europe tell cancer patients? Lancet. 1993; 341(8843):473-476. 5. Loge JH, Kaasa S, Ekeberg O, Falkum E, Hytten K. Attitudes toward informing the cancer patient—a survey of Norwegian physicians. Eur J Cancer. 1996;32A(8):1344-1348. 6. Innes S, Payne S. Advanced cancer patients’ prognostic information preferences: a review. Palliat Med. 2009;23(1):29-39. 7. Voorhees J, Rietjens J, Onwuteaka-Philipsen B, et al. Discussing prognosis with terminally ill cancer patients and relatives: a survey of physicians’ intentions in seven countries. Patient Educ Couns. 2009;77(3):430-436.
Downloaded from ajh.sagepub.com by guest on November 14, 2015
Nakajima et al
781
8. Kazdaglis GA, Arnaoutoglou C, Karypidis D, et al. Disclosing the truth to terminal cancer patients: a discussion of ethical and cultural issues. East Mediterr Health J. 2010;16(4):442-447. 9. Kadakia KC, Moynihan TJ, Smith TJ, Loprinzi CL. Palliative communications: addressing chemotherapy in patients with advanced cancer. Ann Oncol. 2012;23(suppl 3):29-32. 10. Morita T, Akechi T, Ikenaga M, et al. Late referrals to specialized palliative care service in Japan. J Clin Oncol. 2005;23(12): 2637-2644. 11. Temel JS, Greer JA, Admane S, et al. Longitudinal perceptions of prognosis and goals of therapy in patients with metastatic non-small-cell lung cancer: results of a randomized study of early palliative care. J Clin Oncol. 2011;29(17):2319-2326. 12. Temel JS, Greer JA, Muzikansky A, et al. Early palliative care for patients with metastatic non-small-cell lung cancer. N Engl J Med. 2010;363(8):733-742. 13. Yoong J, Park ER, Greer JA, et al. Early palliative care in advanced lung cancer: a qualitative study. JAMA Intern Med. 2013;173(4):283-290. 14. Greer JA, Pirl WF, Jackson VA, et al. Effect of early palliative care on chemotherapy use and end-of-life care in patients with metastatic non-small-cell lung cancer. J Clin Oncol. 2012;30(4):394-400. 15. Zimmermann C, Swami N, Krzyzanowska M, et al. Early palliative care for patients with advanced cancer: a cluster-randomised controlled trial. Lancet. 2014;383(9930):1721-1730. doi:10.1016/ S0140-6736(13)62416-2. 16. Hui D, Kim SH, Roquemore J, et al. Impact of timing and setting of palliative care referral on quality of end-of-life care in cancer patients. Cancer. 2014;120(11):1743-1749. 17. Jacobsen J, Jackson V, Dahlin C, et al. Components of early outpatient palliative care consultation in patients with metastatic non-small cell lung cancer. J Palliat Med. 2011;14(4):459-464. 18. Fouquet C, Bredart A, Bouleuc C. Coping among patients with advanced cancer and medical communication. Bull Cancer. 2013;100(9):887-895. 19. Finlay E, Casarett D. Making difficult discussions easier: using prognosis to facilitate transitions to hospice. CA Cancer J Clin. 2009;59(4):250-263. 20. Morita T, Akechi T, Ikenaga M, et al. Communication about the ending of anticancer treatment and transition to palliative care. Ann Oncol. 2004;15(10):1551-1557. 21. Hancock K, Clayton JM, Parker SM, et al. Truth-telling in discussing prognosis in advanced life-limiting illnesses: a systematic review. Palliat Med. 2007;21(6):507-517. 22. Innes S, Payne S. Advanced cancer patient’ prognostic information preference: a review. Palliat Med. 2009;23(1):29-39. 23. Nakajima N, Hata Y, Onishi H, et al. The evaluation of the relationship between the level of disclosure of cancer in terminally ill patients with cancer and the quality of terminal care in these patients and their families using the Support Team Assessment Schedule. Am J Hosp Palliat Med. 2013;30(4):370-376. 24. Fumis RR, De Camargo B, Dei Giglio A. Physician, patient and family attitudes regarding information on prognosis: a Brazilian survey. Ann Oncol. 2012;23(1):205-211. 25. Daugherty CK, Hlubocky FJ. What are terminally ill cancer patients told about their expected deaths? A study of cancer
26.
27.
28.
29. 30.
31.
32.
33.
34.
35.
36.
37. 38.
39. 40.
41.
42. 43.
physicians’ self-reports of prognosis disclosure. J Clin Oncol. 2008;26(36):5988-5933. Miyashita M, Matoba K, Sasahara T, et al. Reliability and validity of Japanese version STAS (STAS-J). Palliat Support Care. 2004; 2(4):379-384. Jacobsen J, Jackson VA. A communication approach for oncologists: understanding patient coping and communicating about bad news, palliative care, and hospice. J Natl Compr Canc Netw. 2009:7(4):475-480. Higginson IJ. Clinical audit in palliative care. In: Higginson IJ, ed. Clinical Audit in Palliative Care. Oxford: Radcliffe Medical Press; 1993:8-15. Higginson IJ. Clinical audit and organizational audit in palliative care. Cancer Surv. 1994;21:233-245. Higginson IJ, McCarthy M. Validity of the support team assessment schedule: do staffs’ ratings reflect those made by patients or their families? Palliat Med. 1993;7(3):219-228. Higginson IJ, McCarthy M. A comparison of two measures of quality of life: their sensitivity and validity for patients with advanced cancer. Palliat Med. 1994;8(4):282-290. Edmonnds PM, Stuttaford JM, Penny J, et al. Do hospital palliative care teams improve symptom control? Use of a modified STAS as an evaluation tool. Palliat Med. 1998;12(5): 345-351. Lo RS, Ding A, Chung T, et al. Prospective study of symptom control in 133 cases of palliative care. Palliat Med. 1999;13(4): 335-340. Higginson IJ. Clinical audit and organizational audit in palliative care. In: Field D, Clark D, Corner J, et al, eds. Researching Palliative Care. Buckingham: Open University Press; 2001:170-183. Aaronson NK, Ahmedzai S, Bergman B, et al. The European Organization for Research and Treatment of Cancer QLQ-C30: a quality-of-life instrument for use in international clinical trials in oncology. J Natl Cancer Inst. 1993;85(5):365-376. Cella DF, Tulsky DS, Gray G, et al. The Functional Assessment of Cancer Therapy (FACT) scale; development and validation of the general measure. J Clin Oncol. 1993;11(5):570-579. Wang SY, Chen CH, Chen YS, Huang HL. The attitude toward truth telling of cancer in Taiwan. J Psychosom Res. 2004;57(1):53-58. Li JY, Zou LQ, Huang MJ, et al. To tell or not to tell: attitudes of Chinese oncology nurses towards truth telling of cancer diagnosis. J Clin Nursing. 2008;17(18):2463-2470. Ghavamzadeh A, Bahar B. Communication with the cancer patient in Iran. Ann N Y Acad Sci. 1997;809:261-265. Ozdogan M, Samur M, Artec M, Yildiz M, Savas B, Bozcuk HS. Factors related to truth-telling practice of physicians treating patients with cancer in Turkey. J Palliat Med. 2006;9(5):1114-1119. Overview of the ‘‘Cancer Control Act’’. Web site. http://www. mhlw.go.jp/english/wp/wp-hw3/dl/2-007.pdf#search¼’cancerþ controlþactþjapan’ accessed May 8, 2013. Morita T, Fujimoto K, Tei Y. Palliative care team: the first year audit in Japan. J Pain Symptom Manage. 2005;29(5):458-465. Morita T, Miyashita M, Tsuneto S, Sato K, Shima Y. Late referrals to palliative care units in Japan: nationwide follow-up survey and effects of palliative care team involvement after the Cancer Control Act. J Pain Symptom Manage. 2009;38(2):191-196.
Downloaded from ajh.sagepub.com by guest on November 14, 2015
American Journal of Hospice & Palliative Medicine® 32(7)
782 44. Miyashita M, Morita T, Hirai K. Evaluation of end-of-life cancer care from the perspective of bereaved family members: the Japanese experience. J Clin Oncol. 2008;26(23):3845-3852. 45. Marc Ho ZJ, Krishna LK, Goh C, et al. The physician–patient relationship in treatment decision making at the end of life: a pilot study of cancer patients in a Southeast Asian Society. Palliat Support Care. 2013;11(1):13-19. 46. Chiu TY, Hu WY, Huang HL, et al. Prevailing ethical dilemmas in terminal care for patients with cancer in Taiwan. J Clin Oncol. 2009;27(24):3964-3968. 47. Akabayashi A, Fetters MD, Elwyn TS. Family consent, communication, and advance directives for cancer disclosure: a Japanese case and discussion. J Med Ethics. 1999;25(4):296-301.
48. Uchitomi Y, Yamawaki S. Truth-telling practice in cancer care in Japan. In: Surbone A, Zwitter M, eds. Communication With the Cancer Patient. Information & Truth. New York: The New York Academy of Sciences; 1997:290-299. 49. Porter LS, Keefe FJ, Hurwitz H, Faber M. Disclosure between patients with gastrointestinal cancer and their spouses. Psychooncology. 2005;14(12):1030-1042. 50. Lawlor PG, Fainsinger RL, Bruera ED. Delirium at the end of life: critical issues in clinical practice and research. JAMA. 2000; 284(19):2427-2429. 51. Wada T, Wada M, Wada M, et al. Characteristics, interventions, and outcomes of misdiagnosed delirium in cancer patients. Palliat Support Care. 2010;8(2):125-131.
Downloaded from ajh.sagepub.com by guest on November 14, 2015
