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Barriers to referral to inpatient palliative care units in Japan: a qualitative survey with content analysis
Abstract
Objectives We investigated the barriers to referral to inpatient palliative care units (PCUs) through a qualitative study across various sources of information, including terminal cancer patients, their families, physicians, and nurses.Materials and methods There were 63 participants, including 13 advanced cancer patients, 10 family members, 20 physicians, and 20 nurses in palliative care and acute care cancer settings from five regional cancer institutes in Japan. Semi-structured interviews were conducted regarding barriers to referral to PCU, and data were analyzed by content analysis method.Results A total of 21 barriers were identified by content analysis. The leading barriers were (1) a negative image of PCUs by patients and families (n = 39), (2) delay of termination of anti-cancer treatment by physicians in the general wards (n = 24), (3) unwillingness to end anti-cancer treatment and denial of the fatal nature of the disease by patients and families (n = 22), (4) patient's wish to receive care from familiar physicians and nurses (n = 20), and (5) insufficient knowledge of PCUs by medical staff in general wards (n = 17).Conclusions To correct these unfavorable images and misconceptions of PCUs, it is important to eliminate the negative image of PCUs from the general population, patients, families, and medical staffs. In addition, early introduction of palliative care options to patients and communication skills training regarding breaking bad news are relevant issues for a smooth transition from anti-cancer treatment to palliative care.
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Palliative care is perceived as 'a place to die,' and this stigma is a barrier to timely referrals and to patient acceptance of treatment.
“Patients and health professionals may perceive PC as ‘a place to die,’ and this stigma is a barrier to timely referrals and to patient acceptance of treatment.”
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“Prior research has suggested that the term “palliative care” itself might be a deterrent to early referrals and that the term “supportive care” may be more favorable for some hospital-based palliative care programs.(12-14) The term “palliative care” carries a stigma for physicians, patients, and their caregivers, who…”
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“The presentation of palliative and hospice care could be an effective way to eliminate prejudices and barriers that prevent a proper understanding of palliative care (Fadul et al. 2009; Miyashita et al. 2008).”
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“As well, physicians may delay introducing HPC to patients because of difficulties with prognostication [10, 11], reluctance to deliver a terminal diagnosis [9], and lack of knowledge on HPC [12].”
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“The inadequate awareness and stigmatization of PC, which is perceived as a place to die, are barriers that complicate the early referral of patients to PC [10,11].”
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“Factors potentially contributing to the achievement of these outcomes were explored in survey studies, such as determinants of home death and barriers to referral to specialized palliative care services [8–12].”
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“Unfortunately, similarly to cancer patients [34], MPM patients often refuse palliative care because of their denial of the fatal nature of the disease.”
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“A negative image of palliative care units is held by terminal cancer patients [15, 16], family members [15, 16], physicians [16], nurses [16], and the general population [17].”
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Kinoshita, S., Miyashita, M., Morita, T., Sato, K., Shoji, A., Chiba, Y., Miyazaki, T., Tsuneto, S., & Shima, Y. (2015) · American Journal of Hospice and Palliative Medicine® · doi:10.1177/1049909115578385 · Cited by 6
“Around half of the Japanese bereaved family members who were asked about the timing of referrals to PCUs responded that this occurred late and, sometimes, too late.11,12 An independent determinant of a family’s perception of timing of referrals to PCUs as late was their belief before admission that palliative care wou…”
BackgroundInfluentialSelf-citationHiratsuka, Y., Oishi, T., Miyashita, M., Morita, T., Mack, J. W., Takahashi, M., Shirota, H., Otsuka, K., Ishioka, C., & Inoue, A. (2021) · Annals of Palliative Medicine · doi:10.21037/apm-20-2045 · Cited by 6
“Many Japanese people have the image of palliative care as end-of-life care and have resistance to the word “palliative care” to remind them of death (24-28).”
BackgroundSelf-citationSocial factors affecting home-based end-of-life care for patients with cancer and primary caregivers
Hiramoto, S., Hashimoto, R., Morita, T., Kizawa, Y., Tsuneto, S., Shima, Y., Masukawa, K., Miyashita, M., & Hitosugi, M. (2024) · Supportive Care in Cancer · doi:10.1007/s00520-024-09074-1 · Cited by 4
“However, even if there is a preference for home-based care, patients and families often change their minds [18], and regional cultural preferences and disparities in the provision of corresponding medical care also influence the outcome of not receiving home-based care [15, 19].”
Self-citationSanjo, M., Morita, T., Miyashita, M., Sato, K., Kamibeppu, K., Tsuneto, S., & Shima, Y. (2017) · American Journal of Hospice and Palliative Medicine® · doi:10.1177/1049909117729805 · Cited by 4
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“Clinicians may feel that referral would destroy a patient’s and a family’s hope [33] and some patients may refuse referral because of stigma and/or denial [34].”
BackgroundPaiva, C. E., Seriaco, F. D. L. G. D. F., Nascimento, M. S. D. A., Zago, F. C., Costa, E. D., Ciorlia, J. B., & Paiva, B. S. R. (2020) · Journal of Pain and Symptom Management · doi:10.1016/j.jpainsymman.2020.01.005 · Cited by 3
Ichikura, K., Matsuoka, S., Chiba, H., Ishida, H., Fukase, Y., Murase, H., Tagaya, H., Takeuchi, T., & Matsushima, E. (2023) · BMC Palliative Care · doi:10.1186/s12904-023-01138-z · Cited by 3
Poisson, C., Mateus, C., Sampetrean, A., Renard, P., Scotté, F., Verret, B., Mardaghi, J., Dauchy, S., Vigouret-Viant, L., Dumont, S., et al. (2023) · Supportive Care in Cancer · doi:10.1007/s00520-023-07782-8 · Cited by 3
Sihra, L. (2010) · Journal of Palliative Medicine · doi:10.1089/jpm.2009.0282 · Cited by 2
Information Needs in Palliative Care: Patient and Family Perspectives
Tibi-Lvy, Y., & Bungener, M. (2012) · InTech eBooks · doi:10.5772/31817 · Cited by 1
“There is a rich literature concerning this training (Hatem et al., 2008; Miyashita et al., 2008; Ferrell et al., 2007; Alexander et al., 2006; McFarland & Rhoades, 2006; Clayton et al., 2005), which is aimed at increasing the communication skills of caregivers, or at least making them aware of…”
BackgroundPalliative Care in Critically Ill Cancer Patients
Haider, A., Azhar, A., & Madden, K. (2019) · Springer eBooks · doi:10.1007/978-3-319-74588-6_144 · Cited by 1
祐司, 山., Hirakata, M., 轟慶子, 岡崎賀美, Ishiguro, R., Nobutou, A., Matsubara, M., 麻利, 小., Hata, K., & Iwamitsu, Y. (2013) · Palliative Care Research · doi:10.2512/jspm.8.361 · Cited by 1
Palliative Care in Critically Ill Cancer Patients
Haider, A., Azhar, A., & Madden, K. (2019) · Springer eBooks · doi:10.1007/978-3-319-74698-2_144-1 · Cited by 1
Toward A Theology of Palliative Care: Faith, Reason, Praxis, and Love
Henson, D. M. (2012) · The Heythrop Journal · doi:10.1111/j.1468-2265.2012.00778.x
Parsons, H. A., Hui, D., Nguyen, N. L., Palla, S. L., Liu, J., Yennurajalingam, S., Kurzrock, R., & Bruera, E. D. (2010) · Journal of Clinical Oncology · doi:10.1200/jco.2010.28.15_suppl.9062
Hospice Care in Malaysia: Knowledge, Attitude and Time of Discussion
Solomon, S. E. (2015) · The Scholars Repository - LLU (Loma Linda University)
Timing of Use of the Term “Palliative Care” for Cancer Patients by Physicians and Nurses in Japan
Hayashi, Y., Kobayakawa, M., Makino, Y., 白川峰子, 重山千恵, Yamanaka, K., Izumitani, S., Oshita, K., Nakanuno, R., Okamura, H., et al. (2016) · Palliative Care Research · doi:10.2512/jspm.11.209
Late Referral to Palliative Care Services
Shin, D. W., Kang, J., Kim, Y. H., Kim, S., & Joo, J.-S. (2011)
What Have Medical Students Learned from Bedside Learning in Hospices?
Tatokoro, M., Takahashi, M., & Matsushita, K. (2017) · Palliative Care Research · doi:10.2512/jspm.12.229
Nagaoka, H., Sakashita, A., Hamano, J., Kishino, M., Iwata, N., Fukuchi, T., Shima, Y., & Kizawa, Y. (2017) · Palliative Care Research · doi:10.2512/jspm.12.789
Withholding and Withdrawing Life-Sustaining Treatment
Haward, M. F., & Janvier, A. (2020) · Springer eBooks · doi:10.1007/978-3-030-28829-7_30
Cancer Patients’ Perceptions of the Scope of Palliative Care and Related Factors
Takei, Y., Yamamoto, S., Morooka, Y., Minamiguchi, Y., Hatakeyama, A., Tatsumi, Y., & Arao, H. (2021) · Palliative Care Research · doi:10.2512/jspm.16.35
Kizawa, Y., Yamaguchi, T., Yagi, Y., Miyashita, M., Shima, Y., & Ogawa, A. (2021) · Japanese Journal of Clinical Oncology · doi:10.1093/jjco/hyab098
Self-citationYanaizumi, R., Nagamine, Y., Harada, S., & Goto, T. (2024) · Supportive Care in Cancer · doi:10.1007/s00520-024-09012-1
“In the irAEs ( +) group, 50% of the patients continued to receive chemotherapy other than ICIs after completion of their ICI courses, which may not have led to their transfer to palliative care units [23].”
Bennardi, M., Diviani, N., Gamondi, C., Stüssi, G., Saletti, P., Cinesi, I., & Rubinelli, S. (2020) · Figshare · doi:10.6084/m9.figshare.12121761
Ichikura, K., Matsuoka, S., Chiba, H., Ishida, H., Fukase, Y., Murase, H., Tagaya, H., Takeuchi, T., & Matsushima, E. (2024) · Figshare · doi:10.6084/m9.figshare.26575313
Bennardi, M., Diviani, N., Gamondi, C., Stüssi, G., Saletti, P., Cinesi, I., & Rubinelli, S. (2020) · Figshare · doi:10.6084/m9.figshare.12121758
Metadata
- Authors
- Miyashita, M., Hirai, K., Morita, T., Sanjo, M., & Uchitomi, Y.
- Affiliations
- The University of Tokyo (JP)
- The University of Osaka (JP)
- National Cancer Center Hospital East (JP)
- Corresponding author
- Miyashita, Mitsunori
- Venue
- Supportive Care in Cancer
- Published
- 2007-02-21
- Volume
- 16
- Issue
- 3
- Pages
- 217-222
- ISSN
- 0941-4355 (ISSN-L)
- 1433-7339
- OpenAlex
- W2038043367
- Cited by
- 72
- References
- 30
- Citations by year
- 2024: 4 · 2023: 6 · 2022: 1 · 2021: 4 · 2020: 6 · 2019: 9 · 2018: 1 · 2017: 7 · 2016: 2 · 2015: 8 · 2014: 2 · 2013: 4 · 2012: 3
- FWCI
- 3.43
- Type
- journal article
- Language
- en
- Open access
- closed
- Licence
- www.springer.com/tdm (tdm)
- Locations
- Supportive Care in Cancer (publishedVersion)
- PubMed (publishedVersion)
- Topics
- Health Sciences › Medicine › Public Health, Environmental and Occupational Health › Palliative Care and End-of-Life Issues
- Health Sciences › Medicine › Public Health, Environmental and Occupational Health › Palliative and Oncologic Care
- Health Sciences › Medicine › Anesthesiology and Pain Medicine › Pain Management and Opioid Use
- Keywords
- palliative care units, referral barriers, terminal cancer, advance care planning, Japan
- MeSH terms
- Adult, Attitude of Health Personnel, Family, Female, Humans, Inpatients, Japan, Male, Middle Aged, Neoplasms, Palliative Care, Referral and Consultation, Terminal Care, Qualitative Research
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