This study is the first study to clarify the current status of palliative care practices in ICUs in Japan, including palliative care screening and symptom control from the perspective of the physician director.
We identified six key findings in this study. The first and most important finding was that only 20–36% of ICU physicians believed palliative care, including physical and psychological symptom management, communication, and PICS prevention, was adequately provided. This self-assessment of palliative care practice is difficult to evaluate correctly, because there are no absolute standards and no similar previous studies, but it is a low figure based on the current understanding of the benefits of palliative care. Furthermore, as many patients in ICU are under sedation for reasons such as mechanical ventilation, the degree of their distressing symptoms may be underestimated. These results indicate that more focus on improving symptom relief is needed in the ICU, such as educating ICU physicians on symptom management and palliative care.
The second important finding of this study was that very few ICUs implemented palliative care screening, and many ICUs had no criteria for determining which patients required palliative care. End-of-life care for dying patients is only one component of palliative care in ICU, it is also important to care for patients and their families who are uncertain about their recovery from intensive care [34]. However, the results of this study indicate that more than half the time, the timing of the introduction of palliative care is determined by the empirical judgment of physicians, and more than half of the physicians responded that the appropriate timing was when treatment became futile. This indicates that the introduction of palliative care by physicians is often late and inappropriate. It suggests the essential understanding of palliative care may be insufficient, and palliative care is being used only as end-of-life care. Specifically, at the initiation of treatment in the ICU, the focus may be solely on prolonging the patient’s life, without paying attention to uncertainty of the patient’s prognosis and of meaningful functional recovery. It is likely that only once survival seems impossible and curative management is gradually withheld that palliative care is provided, at this point, possibly inadequately. In addition, in our study, from the physician’s perspective, facilities that implemented palliative care screening were more likely to have adequate palliation of physical symptoms.
To improve the quality of life of patients and their families, screening may be an important solution to acknowledge their unmet palliative care needs, with proper recognition of the uncertainty of patient recovery. It has been reported that the early introduction of palliative care reduced medical costs in the ICU, increased hospice transfers, decreased post-discharge emergency room visits, and decreased post-discharge readmissions without reducing in-hospital mortality or 30-day mortality [7]. Integration of intensive care and palliative care in the ICU could be an important factor in improving the quality of life of patients and their families.
Our third finding was that even though pain, sedation and delirium are continuously monitored in the ICU, only about a quarter of facilities were found to have symptom relief protocols for these specific symptoms. This is consistent with a previous study in Italy (30%) [29]. In addition to that, our study found facilities with standardized protocols for symptom management for terminally ill patients provide a more appropriate palliation of physical and psychological symptoms and PICS prevention. These results indicate that these symptoms have been identified as items requiring symptom management and show there is an opportunity to improve symptom control with the implementation of standardized management practices.
Our fourth finding was in most ICUs there were no standardized protocols related to the withdrawal of life-sustaining treatment, or symptom management after withdrawal of life-sustaining treatment. Internationally, extubation is an important procedure in ICU palliative care [35,36,37], and when extubation is deemed appropriate, it is recommended that ventilation be discontinued as quickly as possible, with the patient’s comfort being the highest priority38. In Japan, there are guidelines for the decision-making process regarding the withholding and withdrawal of life-sustaining treatment [39]. While it is possible to withdraw treatment, the lack of clear criteria and laws regarding physician exemption may be the reason for our finding of a lack of standardized protocols. Several court decisions have ruled that life-sustaining treatment can be discontinued if certain conditions are met [13, 14]. These conditions are: (1) limitation of the duty to treat: the patient is suffering from an untreatable disease and is in a terminal condition with no hope of recovery and death is inevitable (repeated diagnosis by multiple doctors is desirable); and (2) the right of the patient to self-determination: the patient’s expressed will to discontinue the treatment must exist at the time of discontinuation, and if there is no clear expression of will at the stage of considering discontinuation, the patient’s presumptive will should be recognized. In addition, according to “The national survey on attitudes toward medical care in the final stages of life”, only 28.6% of physicians refer to the guidelines, and their dissemination is not sufficient [40]. Lack of dissemination and understanding of these laws and guidelines to both medical professionals and the public may be one of the major barriers to the widespread use of withdrawal of life-sustaining treatment and its protocols. In the future, it may be necessary to educate medical professionals on the knowledge of withholding or withdrawing of life-sustaining treatment, and to develop standardized protocols for them including terminal weaning and extubation, while also obtaining consensus from academic societies and the general public.
The fifth important finding is that 74% of the facilities did not hold multidisciplinary conferences on palliative care. A multidisciplinary approach is considered to be an important role in ICU palliative care [34]. Our finding that regular multidisciplinary conferences on palliative care are rarely held in ICUs may be one manifestation of the lack of integration of palliative care into ICU care in Japan. Our study found that in ICUs that hold multidisciplinary conferences at least once a month, a significantly higher percentage of respondents considered the appropriate timing to introduce palliative care was within 24 h of ICU admission. By conducting multidisciplinary conferences, there is a possibility that the comprehensive needs of patients and their families can be recognized within the team and care can be improved. Palliative care needs to be developed and integrated into intensive care by introducing both palliative care screening and multidisciplinary conferences.
The sixth important finding was that although goals-of-care discussions with family members were held, the content of ACP and AD and the psychosocial issues of family members were not adequately discussed. The ACP process itself and the ADs left as a result of the ACP discussions has the potential to (1) allow patients, those close to them and clinical teams to better utilize shared decision making when planning care; (2) reduce confusion and conflict when patients are acutely ill, have lost capacity and have a high risk of dying; (3) improve the clarity of communication surrounding care at the end of life and reduce the severity of grief amongst friends and families; and (4) reduce the incidence and impact of burn-out in healthcare professionals [41]. As part of the initial assessment of palliative care, it is considered best practice to identify a pre-existing AD or contents of ACP discussions at the time of admission or within 24 h of admission [42, 43]. The previously mentioned Japanese national survey on attitudes toward medical care in the final stages of life found 75.5% of the general public and 41.6% of physicians had never heard of ACP. This increased to 94.7 and 76.1%, respectively, when also including those who responded”I have heard of it but do not know much about it”[40]. In addition, the same survey found the rate of ACP practice by physicians was also low at 27.3%, which may be due to the insufficient dissemination of the concept of ACP in Japan.
In addition, the following two factors may act as barriers to disseminating palliative care in ICUs in Japan. First is the high-cost medical expense system currently in place, which sets a limit (40,000–200,000 yen) on medical expenses based on income, and monthly payments above the limit are refunded at a later date. Since patients, their families, and medical professionals can continue treatment and care, including life-sustaining treatment without incurring costs, the introduction of primary palliative care tends to be postponed. The other barrier relates to how the health insurance system reimburses specialized palliative care. In Japan, inpatient hospice/palliative care units are only available for patients with cancer and acquired immunodeficiency syndrome. In addition, palliative care consultations cannot be reimbursed except for patients with cancer or end-stage heart failure. This may limit referrals to specialized palliative care.
Implications to practice
It is evident from this study that the integration of palliative care and ICU care is still inadequate in Japan. The results of this study should be used consider how best to screen all patients admitted to the ICU, conduct multidisciplinary conferences for patients who have screened positive, and identify solutions for these patients. This may help identify the potential comprehensive palliative care needs of ICU patients and their families and to respond appropriately to those needs.
Another suggestion stemming from this study is to develop a standardized protocol for symptom management and the withholding or withdrawing of treatment. In addition to improving symptom relief for patients it would also reduce the legal risks for healthcare providers. Furthermore, the development of a pathway for treatment discontinuation may lower the barrier to active treatment. In Japan, patients and their families may be reluctant to start endotracheal intubation and mechanical ventilation if they are told that extubation is not possible once these two procedures have started [44]. The inability to withdraw life-sustaining treatment if unsuccessful may make a patient hesitant to choose active treatment. Creating and disseminating a standardized protocol for treatment withdrawal driven by academic societies with the patient and public involvement would help improve this situation.
In addition to this, to promote appropriate referral to specialized palliative care and integration of intensive care and palliative care, it may be effective to have palliative care consults covered by health insurance for all diseases, not just cancer and end-stage heart failure.
Limitations
This study had several limitations. First, the response rate was 50%, which is not a low response rate for a survey of doctors, but the results may not accurately reflect the current situation of palliative care in ICUs in Japan. Second, if an institution had multiple ICUs, we let respondents decide which ICU to consider when answering the questionnaire. Therefore, the results of this study may not reflect the actual situation in all ICUs. Thirdly, respondents may not always be familiar with the reality of palliative care in daily ICU practice. The results of this study may be better interpreted in conjunction with the results of an ongoing national survey of nurses in Japan. Fourth, the results for appropriate symptom relief, explanation of illness, and goals-of-care discussion are based on physicians’ overall evaluations and may not reflect the actual state of treatment and care for patients and their families. Prospective observational studies and surveys of bereaved families should be conducted to more accurately evaluate the situation. Finally, the questionnaire used in this study has not been examined for reliability or validity.