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H. Kunikane

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    MS 20 - Value-based Management for Special Populations (ID 542)

    • Event: WCLC 2017
    • Type: Mini Symposium
    • Track: Nursing/Palliative Care/Ethics
    • Presentations: 1
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      MS 20.03 - What Do Patients Want at the End of Life? - East vs West (ID 7739)

      11:00 - 12:30  |  Author(s): H. Kunikane

      • Abstract
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      Although advance care planning (ACP) may prevent non-beneficial care that is discordant with patient wishes at the end-of-life (EOL), nearly 40% of bereaved families in the US said their loved ones had not discussed their EOL care preferences with them (Narang et al, JAMA Oncol 2015). Fewer Japanese studies on EOL discussions (EOLd) with patients have been reported than studies in Western countries. Similarly, few studies investigating what patients want at the EOL have been reported in Japan. Most Japanese studies related to EOL have focused on medical staff, bereaved families, or healthy persons in the general population, rather than on patients themselves. In addition, the most common method of data collection for these studies in Japan has been through administration of questionnaire surveys by mail (J-HOPE3 study 2016, in Japanese). While the perspectives of care providers and family may indirectly reflect the preferences of patients, previous studies have not assessed cancer patients directly and therefore knowledge regarding EOL preferences for this population remains limited and unclear. Possible reasons for not directly investigating the EOL preferences of cancer patients may be related to Japanese cultural taboos regarding discussion of death with cancer patients and the positive cultural value of living without awareness of death, even in the terminal stage of disease. These factors lead to reluctance in discussing EOL care among patients, family members, and medical staff. In contrast, 70% of cancer patients in Sweden had discussions about death with family members within 3 months of their death (Jonasson et al, Eur J Cancer 2011). In a previous study of 529 Japanese cancer patients, only half of the patients preferred to receive information regarding their life expectancy and 30% preferred not to receive such information. Furthermore, 90% of the patients preferred to have their physicians consider the feelings of their family as well (Fujimori et al, Psychooncology 2007). One Japanese research study on the hopes of terminally-ill patients found that symptom control was the most frequently expressed hope at the time of admission to a palliative care unit (PCU). However, patient hopes regarding symptom control and recovery decreased as death approached. In contrast, both existential hope and hope of good human relations increased by the time of death (Naka et al, Shi no rinsho 1998, in Japanese). EOLd should repeatedly occur among patients, families, and medical staff, before patients become incompetent, because patient preferences may change in unexpected ways, as was found in a study of advanced lung cancer patients (Pardon et al, Support Care Cancer 2012). Another Japanese study of advanced cancer patients found that patients strongly preferred that their physicians listen to their distress and concerns (96%), assure them that their painful symptoms would be controlled (97%), and explain the status of their illness and the physical symptoms that would likely occur in the future (95%) (Umezawa et al, Cancer 2015). Patient preferences or hopes near the EOL appear to be similar between Western and Japanese cultures. However, fewer Japanese studies on EOLd have been reported because of cultural taboo for talking about death. In our hospital, when patients with advanced lung cancer had an initial consultation with palliative care physicians to prepare for future PCU admission (N=46), the reasons expressed by patients or their families for considering PCU admission were “want to reduce pain (70%)”, “want to reduce distress (59%)”, “want to live without intensive life-sustaining care (52%)”, and “recommendation by attending physicians or caregivers (39%)”. However, only 9% of patients clearly understood their life expectancy when considering PCU admission. Interestingly, many terminally-ill Japanese cancer patients may wish to take a bath before death. For example, 40% of patients with advanced cancer were bathed while receiving home nursing services within 4 days of death (Tanabe et al, Hospice and Home Care 2015, in Japanese). The role of rehabilitation in PCUs remains unclear and one study found that only 20% of terminally ill cancer patients received rehabilitation in Japan. However, the rate of satisfaction for the rehabilitation reported by bereaved families was extremely high (80%) (J-HOPE3 study 2016, in Japanese). There is limited published information about how physicians obtain the skills necessary for managing their own discomfort with talking about death. Communicating in an honest manner, without taking away hope, is an essential skill for the physician treating terminally-ill cancer patients. Japanese physicians, however, are less likely to have educational opportunities to learn how to discuss bad news with patients. Japanese physicians, in particular, often feel discomfort with discussing prognosis, hospice, site of death, and do-not-resuscitate (DNR) status with patients. Improvement in the communication skills of physicians is key to facilitating more appropriate ACP with cancer patients. For communication with terminally-ill cancer patients, the classic strategy of “hope for the best and prepare for the worst” or “use more open questions rather than closed questions with patients” can be recommended as part of an ACP discussion. Using a palliative prognostic index may be helpful in predicting prognosis for terminally-ill cancer patients more accurately (Maltoni et al, Oncologist 2012). However, because accurate prognostic understanding has been found to be associated with lower quality of life (QOL) and worse anxiety, these patients should be offered psychosocial support (El-Jawahri, Cancer 2014). Discordance between the care desired and the care received by patients is another important EOL issue. The use of structured communication tools, rather than an ad-hoc approach, is recommended to facilitate more appropriate EOLd, and to avoid care not desired by patients (Oczkowski et al, PLoS One 2016). Finally, a phase III study evaluating the role of early palliative care (EPC) suggested that EPC provided significantly better QOL and better survival than usual care in patients with advanced non-small cell lung cancer (Temel et al, N Engl J Med 2010). Similarly, our feasibility study demonstrated that EPC provided better QOL in patients with advanced lung cancer (Yokoyama et al. WCLC 2015). We recommend EPC referrals for lung cancer patients to support earlier EOLd and earlier understanding of the hopes and goals of patients with advanced lung cancer.

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