The Bereaved Families' Preferences for Individualized Goals of Care for Terminal Dyspnea: What Is an Acceptable Balance between Dyspnea Intensity and Communication Capacity?
Background: Toward the individualized care of terminally ill patients with dyspnea (?terminal dyspnea?), it is essential to identify individualized goals of care (GOC) to achieve an acceptable balance between dyspnea intensity and communication capacity. Objective: To explore preferences for individ...
| Main Authors: | , , , , , , , , , |
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| Format: | Article |
| Language: | English |
| Published: |
Mary Ann Liebert
2020-05-01
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| Series: | Palliative Medicine Reports |
| Subjects: | |
| Online Access: | https://www.liebertpub.com/doi/full/10.1089/PMR.2020.0035 |
| _version_ | 1797346117166301184 |
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| author | Masanori Mori Tatsuya Morita Kengo Imai Naosuke Yokomichi Takashi Yamaguchi Kento Masukawa Yoshiyuki Kizawa Satoru Tsuneto Yasuo Shima Mitsunori Miyashita |
| author_facet | Masanori Mori Tatsuya Morita Kengo Imai Naosuke Yokomichi Takashi Yamaguchi Kento Masukawa Yoshiyuki Kizawa Satoru Tsuneto Yasuo Shima Mitsunori Miyashita |
| author_sort | Masanori Mori |
| collection | DOAJ |
| description | Background: Toward the individualized care of terminally ill patients with dyspnea (?terminal dyspnea?), it is essential to identify individualized goals of care (GOC) to achieve an acceptable balance between dyspnea intensity and communication capacity.
Objective: To explore preferences for individualized GOC for terminal dyspnea, and factors associated with the preferences.
Design: A nationwide cross-sectional survey.
Setting/Subjects: In total, 1055 bereaved families of cancer patients admitted to 167 inpatient hospices in Japan.
Measurements: Preferences for individualized GOC for terminal dyspnea to achieve an acceptable balance between dyspnea intensity and communication capacity, should individuals experience continuous moderate or severe/overwhelming dyspnea despite optimal palliative care, and perceptions about a good death.
Results: Among 548 participants (response rate?=?52%), we analyzed responses of 477 families whose loved one suffered dyspnea in the last week of life. In total, 167 (45%; 95% confidence interval [CI]?=?40%?50%) and 272 (80%; 95% CI?=?75%?84%) participants would prioritize dyspnea relief over communication capacity, should they continuously suffer moderate or severe/overwhelming dyspnea, respectively. In multivariate analyses, the determinants of the prioritization of dyspnea relief were perceiving physical comfort as important for a good death (odds ratio [OR]?=?1.389; 95% CI?=?1.062?1.818; p?=?0.017) in moderate dyspnea, and perceiving physical comfort (OR?=?2.505; 95% CI?=?1.718?3.651; p?<?0.001) and not perceiving mental awareness (OR?=?0.695; 95% CI?=?0.529?0.913; p?=?0.009) as important in severe/overwhelming dyspnea.
Conclusions: Preferences for individualized GOC for terminal dyspnea can vary among individuals and with different symptom intensity, and may be influenced by perceptions about a good death. Outcome measurements incorporating an acceptable balance between dyspnea intensity and communication capacity should be developed. |
| first_indexed | 2024-03-08T11:28:19Z |
| format | Article |
| id | doaj.art-c1bfe35a1e814f7082fbe8120ed1a9c5 |
| institution | Directory Open Access Journal |
| issn | 2689-2820 |
| language | English |
| last_indexed | 2024-03-08T11:28:19Z |
| publishDate | 2020-05-01 |
| publisher | Mary Ann Liebert |
| record_format | Article |
| series | Palliative Medicine Reports |
| spelling | doaj.art-c1bfe35a1e814f7082fbe8120ed1a9c52024-01-26T04:47:59ZengMary Ann LiebertPalliative Medicine Reports2689-28202020-05-0111424910.1089/PMR.2020.0035The Bereaved Families' Preferences for Individualized Goals of Care for Terminal Dyspnea: What Is an Acceptable Balance between Dyspnea Intensity and Communication Capacity?Masanori MoriTatsuya MoritaKengo ImaiNaosuke YokomichiTakashi YamaguchiKento MasukawaYoshiyuki KizawaSatoru TsunetoYasuo ShimaMitsunori MiyashitaBackground: Toward the individualized care of terminally ill patients with dyspnea (?terminal dyspnea?), it is essential to identify individualized goals of care (GOC) to achieve an acceptable balance between dyspnea intensity and communication capacity. Objective: To explore preferences for individualized GOC for terminal dyspnea, and factors associated with the preferences. Design: A nationwide cross-sectional survey. Setting/Subjects: In total, 1055 bereaved families of cancer patients admitted to 167 inpatient hospices in Japan. Measurements: Preferences for individualized GOC for terminal dyspnea to achieve an acceptable balance between dyspnea intensity and communication capacity, should individuals experience continuous moderate or severe/overwhelming dyspnea despite optimal palliative care, and perceptions about a good death. Results: Among 548 participants (response rate?=?52%), we analyzed responses of 477 families whose loved one suffered dyspnea in the last week of life. In total, 167 (45%; 95% confidence interval [CI]?=?40%?50%) and 272 (80%; 95% CI?=?75%?84%) participants would prioritize dyspnea relief over communication capacity, should they continuously suffer moderate or severe/overwhelming dyspnea, respectively. In multivariate analyses, the determinants of the prioritization of dyspnea relief were perceiving physical comfort as important for a good death (odds ratio [OR]?=?1.389; 95% CI?=?1.062?1.818; p?=?0.017) in moderate dyspnea, and perceiving physical comfort (OR?=?2.505; 95% CI?=?1.718?3.651; p?<?0.001) and not perceiving mental awareness (OR?=?0.695; 95% CI?=?0.529?0.913; p?=?0.009) as important in severe/overwhelming dyspnea. Conclusions: Preferences for individualized GOC for terminal dyspnea can vary among individuals and with different symptom intensity, and may be influenced by perceptions about a good death. Outcome measurements incorporating an acceptable balance between dyspnea intensity and communication capacity should be developed.https://www.liebertpub.com/doi/full/10.1089/PMR.2020.0035communication capacitydyspnea intensitygoals of careterminal dyspnea |
| spellingShingle | Masanori Mori Tatsuya Morita Kengo Imai Naosuke Yokomichi Takashi Yamaguchi Kento Masukawa Yoshiyuki Kizawa Satoru Tsuneto Yasuo Shima Mitsunori Miyashita The Bereaved Families' Preferences for Individualized Goals of Care for Terminal Dyspnea: What Is an Acceptable Balance between Dyspnea Intensity and Communication Capacity? Palliative Medicine Reports communication capacity dyspnea intensity goals of care terminal dyspnea |
| title | The Bereaved Families' Preferences for Individualized Goals of Care for Terminal Dyspnea: What Is an Acceptable Balance between Dyspnea Intensity and Communication Capacity? |
| title_full | The Bereaved Families' Preferences for Individualized Goals of Care for Terminal Dyspnea: What Is an Acceptable Balance between Dyspnea Intensity and Communication Capacity? |
| title_fullStr | The Bereaved Families' Preferences for Individualized Goals of Care for Terminal Dyspnea: What Is an Acceptable Balance between Dyspnea Intensity and Communication Capacity? |
| title_full_unstemmed | The Bereaved Families' Preferences for Individualized Goals of Care for Terminal Dyspnea: What Is an Acceptable Balance between Dyspnea Intensity and Communication Capacity? |
| title_short | The Bereaved Families' Preferences for Individualized Goals of Care for Terminal Dyspnea: What Is an Acceptable Balance between Dyspnea Intensity and Communication Capacity? |
| title_sort | bereaved families preferences for individualized goals of care for terminal dyspnea what is an acceptable balance between dyspnea intensity and communication capacity |
| topic | communication capacity dyspnea intensity goals of care terminal dyspnea |
| url | https://www.liebertpub.com/doi/full/10.1089/PMR.2020.0035 |
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