[The current role of advance care planning for people with dementia - A narrative review].

Advance care planning (ACP) for people with dementia, as with other diseases, is a necessary process to realize medical treatment and care in the final stage of a person's life. On the other hand, dementia, a disease that is expected to make it difficult for people to make decisions on their own in the future, has a long course, and is characterized by uncertainty regarding the course of the disease, which may also be a limiting factor in the implementation of ACP for people with dementia. On the other hand, the uncertainties may also be a reason for implementing ACP. This paper reviews reports on ACP initiatives for people with dementia from many countries and presents their characteristics, cultural and customary influences, effects, facilitating and inhibiting factors, and recommendations for implementation, with the aim of promoting future ACP initiatives for people with dementia. The aim of the study was to promote future ACP initiatives for people with dementia.

Contemporary Issues and Practicalities in Completing Advance Care Planning for Patients With Severe COPD Living Alone: A Qualitative Study.

Health care professionals working with older people living alone with chronic obstructive pulmonary disease (COPD) to complete advance care planning (ACP) often encounter the double burden of social isolation and acute exacerbations in this planning. The study explored clinicians' perceptions regarding factors influencing the completion of ACP for older people with COPD living alone. Individual interviews were conducted with 18 health care professionals using the video meeting platform in 2020. A semi-structured interview guide included: (a) behavior and lifestyle related to decision-making, (b) desired place to die, and (c) facilitators and barriers to autonomy in patients with severe COPD who live alone. Five main themes were identified: information sharing among team members, patient readiness, desired place of death, economic constraints, and care at the time of and after death. Partly due to the heterogeneity and complexity of clinical courses and treatment responses of COPD, a wide range of social issues of a person's life were related to practicality in the completion of ACP for older people with COPD living alone. Social work knowledge and skills such as in-depth interviewing, outreach finance and welfare support, and holistic perspective play an essential role in completing ACP for COPD patients living alone.

Consensus Report on Destination Therapy in Japan　- From the DT Committee of the Council for Clinical Use of Ventricular Assist Device Related Academic Societies.

Destination therapy (DT) is the indication to implant a left ventricular assist device (LVAD) in a patient with stage D heart failure who is not a candidate for heart transplantation. The implantable LVAD has been utilized in Japan since 2011 under the indication of bridge to transplant (BTT). After almost 10 year lag, DT has finally been approved and reimbursed in May 2021 in Japan. To initiate the DT program in Japan, revision of the LVAD indication from BTT is necessary. Also, in-depth discussion of caregiver issues as well as end-of-life care is indispensable. For that purpose, we assembled a DT committee of multidisciplinary members in August 2020, and started monthly discussions via web-based communication during the COVID-19 pandemic. This is a summary of the consensus reached after 6 months' discussion, and we have included as many relevant topics as possible. Clinical application of DT has just started, and we are willing to revise this consensus to meet the forthcoming issues raised during real-world clinical experience.

[Communication with important others regarding their preferences for end-of-life care].

AIM: Our aim in this study was to explore individual factors that make it likely for Japanese older adults to engage in communication with important other persons regarding their preferences for end-of-life care. METHODS: We conducted a questionnaire survey of outpatients at Tokyo Metropolitan Geriatric Hospital in the last six days of March 2012. Nine-hundred and sixty-eight outpatients consented in writing to participate in this survey. Two items on the questionnaire concerned the participants' attempts to communicate their preferences regarding end-of-life care; that is, whether they had discussed this issue with their significant others and whether they had written notes indicating how they want to be cared for in the final days of their lives. RESULTS: The participants who had designated a surrogate decision-maker were more likely to report answers of both than only discussion (OR=2.52) and less likely to reports answers of no communication than only discussion (OR=0.37). In addition, (a) those who did not wish to rely on artificial nutrition or hydration (OR=0.68) and (b) those who often thought about their death were more likely to be in the only discussion group than in the no communication group, although these factors were not significantly associated with whether the participants were likely to be in the both or only discussion groups. CONCLUSIONS: Our findings indicate that individuals often attempt to clarify their preferences in order to make it easier for their significant others to make end-of-life care decision on their behalf, so that they may receive their desired care.

[End-of-life care in emergency settings in the super-aged society: withholding CPR from frail elderly with severe ADL impairment].

Emergency and intensive care unit demographics have changed with the advent of the super-aged society in Japan. Japan has the highest population aging rate in the world. It is now predicted that an increasing number of people will die at higher age. The oldest old individuals show increasing frailty, with an excess vulnerability to stressors. It is believed that frail elderly would receive limited benefit from highly invasive emergency treatment and advanced intensive care which, on the contrary, could bring about harmful effects on frail elderly. So far a number of frail oldest-old nursing home residents with cardiopulmonary arrest have been taken by ambulance to emergency medical centers to receive cardio-pulmonary resuscitation in vain in Japan. Now is the time to stop the harmful ritual. Withholding CPR from frail elderly with severe ADL impairment would not constitute an act of ageism but the act of humanity based on medical evidence.

Impact of frailty on long-term mortality in older patients receiving intensive care via the emergency department.

The aim of this study was to evaluate whether frailty was associated with 6-month mortality in older adults who were admitted to the intensive care unit (ICU) with an illness requiring emergency care. The investigation was a prospective, multi-center, observational study conducted among the ICUs of 17 participating hospitals. Patients ≥ 65 years of age who were admitted to the ICU directly from an emergency department visit were assessed to determine their baseline Clinical Frailty Scale (CFS) scores before the illness and were surveyed 6 months after admission. Among 650 patients included in the study, the median age was 79 years old, and overall mortality at 6 months was as low as 21%, ranging from 6.2% in patients with CFS 1 to 42.9% in patients with CFS ≥ 7. When adjusted for potential confounders, CFS score was an independent prognostic factor for mortality (one-point increase in CFS, adjusted risk ratio with 95% confidence interval 1.19 [1.09-1.30]). Quality of life 6 months after admission worsened as baseline CFS score increased. However, there was no association between total hospitalization cost and baseline CFS. CFS is an important predictor of long-term outcomes among critically ill older patients requiring emergent admission.

Tips for Managing Ethical Challenges in Advance Care Planning: A Qualitative Analysis of Japanese Practical Textbooks for Clinicians.

(1) Background: While advance care planning (ACP) provides healthcare professionals with valuable tools to meet patients' needs in a person-centered manner, several potential ethical challenges are inherent to the process. However, recent studies have largely focused on ACP practicalities such as implementation, execution, and completion rather than on the ethical challenges that clinicians routinely encounter in ACP practices. (2) Research question/aim/objectives: This study aimed to identify tips for clinicians managing ethical challenges in ACP practices. (3) Methods: It performed a brief search for all Japanese published books pertaining to ACP practice available as of January 2021 using the keywords "advance care planning (ACP)" and "autonomy" and analyze the content of nine practical ACP textbooks for clinicians. (4) Results: Two major themes capturing the essential recommendations for managing ethical challenges in ACP were ultimately identified, namely interprofessional ethics and informed consent. (5) Conclusion: The findings suggested tips for managing ethical challenges in ACP: refer to ethical frameworks for interprofessional collaboration and ethical decision making, assess decision-making capacity of family substitute decision makers and one's eligibility for the role, understand the standard process of informed consent and how to handle situations when the patient are not well informed about the diagnosis and prognosis of non-cancer illness.

Culturally Adapted Consensus Definition and Action Guideline: Japan's Advance Care Planning.

CONTEXT: A conceptual framework for advance care planning is lacking in societies like Japan's valuing family-centered decision-making. OBJECTIVES: A consensus definition of advance care planning with action guideline adapted to Japanese society. METHODS: We conducted a multidisciplinary modified Delphi study 2020-2022. Thirty physicians, 10 healthcare and bioethics researchers, six nurses, three patient care managers, three medical social workers, three law experts, and a chaplain evaluated, in 7 rounds (including two web-based surveys where the consensus level was defined as ratings by ≥70% of panelists of 7-9 on a nine-point Likert scale), brief sentences delineating the definition, scope, subjects, and action guideline for advance care planning in Japan. RESULTS: The resulting 29-item set attained the target consensus level, with 72%-96% of item ratings 7-9. Advance care planning was defined as "an individual's thinking about and discussing with their family and other people close to them, with the support as necessary of healthcare providers who have established a trusting relationship with them, preparations for the future, including the way of life and medical treatment and care that they wish to have in the future." This definition/action guideline specifically included support for individuals hesitant to express opinions to develop and express preparations for the future. CONCLUSION: Adaptation of advance care planning to Japanese culture by consciously enhancing and supporting individuals' autonomous decision-making may facilitate its spread and establishment in Japan and other societies with family-centered decision-making cultures.

Facilitating Advance Care Planning for Patients With Severe COPD: A Qualitative Study of Experiences and Perceptions of Community Physicians, Nurses, and Allied Health Professionals.

Chronic obstructive pulmonary disease (COPD) is a major cause of morbidity worldwide. Patients with severe COPD often fail to receive adequate palliative care and are subject to undesired hospital transfers and cardiopulmonary resuscitation. Although promoting advance care planning (ACP) in the community can help ensure the optimal delivery of palliative care for patients with COPD, the key challenges to routinely implementing ACP are not known. The aim of this study was to identify the perception of healthcare professionals with regard to ACP for adults living with severe COPD and the challenges to facilitating ACP. A multicenter qualitative study design was used. In-depth semistructured interviews were held involving 38 healthcare professionals from 19 institutions in Japan. Text data were analyzed by content analysis. Five main themes capturing the challenges to routine implementation of ACP were identified: daily decision-making; sense of ethical decision-making; in-depth interviewing skills; collaborative information sharing among team members; and knowledge dissemination regarding ACP. The model demonstrates the complexity inherent in ACP facilitation for community-dwelling adults with severe COPD, with all the elements required for successful ACP implementation. We recommend an approach that recognizes the importance of stakeholder education, particularly educating professionals to develop the knowledge, attitudes, and skills required for ACP facilitation: in-depth interviewing, collaborative information sharing, and ethical analysis, focusing on decision-making concerning everyday life support.

Implementation of advance care planning amid the COVID-19 crisis: A narrative review and synthesis.

Advance care planning is considered an important issue in end-of-life care for older adults. The ongoing COVID-19 pandemic has interrupted the healthcare system and end-of-life care tremendously. This review aimed to explore available articles on advance care planning amid the pandemic and analyze qualitatively. PubMed and Google Scholar were searched on February 2021 using the relevant keywords. Retrieved articles were screened applying inclusion criteria. Any article describing advance care planning during the COVID-19 era was included. A qualitative content analysis was conducted. In total, 20 articles incorporating 5542 participants from five countries were included. Among the articles, eight were primary studies and the rest were perspective papers or secondary analysis. From the qualitative content analysis six major themes emerged namely palliative care, lack of coordination among acute care, hospital palliative care, and long-term care, community-based advance care planning, real-time dissemination of scientific information on the regional pandemic situation, online system and legislation. The COVID-19 pandemic had decreased the uptake of advance care planning. Findings of the review suggested simplification of the procedure regarding advance care planning, implementation of community-based advance care planning and utilization of online resources to enhance the process. Geriatr Gerontol Int 2021; 21: 779-787.

Japan Geriatrics Society "Recommendations for the Promotion of Advance Care Planning": End-of-Life Issues Subcommittee consensus statement.

The Japan Geriatrics Society has so far announced "The Japan Geriatrics Society Position Statement 2012" and "Guidelines for the Decision-Making Processes in Medical and Long-Term Care for the Elderly - Focusing on the Use of Artificial Hydration and Nutrition" related to end-of-life care for older adults. In 2018, the Ministry of Health, Labor and Welfare revised the "Guidelines for the Decision-Making Processes in Medical and Long-Term Care in the End of Life," recommending the practice of advance care planning (ACP). This was the first time when the Japanese government publicized its stance on ACP. Immediately after the government's announcement, the Japan Medical Association announced its committee report, "The Super-aged Society and the End-of-life Care," which also recommended the practice of ACP. The guidelines were published when the society was experiencing substantial changes related to geriatric care in Japan, and required timely and ethically appropriate decision-making processes. However, because ACP is a concept imported from English-speaking countries, some Japanese people could find it difficult to understand the role and methodology of ACP because of differences in culture and the medical/long-term care system. Therefore, the Japan Geriatrics Society has decided to publish the "Recommendations for the Promotion of Advance Care Planning" for medical and long-term care professionals nationwide with the aim of using the recommendations on a daily basis. The society recognizes ACP as indispensable to improve end-of-life care for individuals, particularly for older adults. We anticipate that the recommendations will provide practical guidance for those strenuously working toward this goal. Geriatr Gerontol Int 2020; 20: 1024-1028..

The Japan Geriatrics Society consensus statement "recommendations for older persons to receive the best medical and long-term care during the COVID-19 outbreak-considering the timing of advance care planning implementation".

Since the end of 2019, a life-threatening infectious disease (coronavirus disease 2019: COVID-19) has spread globally, and numerous victims have been reported. In particular, older persons tend to suffer more severely when infected with a novel coronavirus (SARS-CoV-2) and have higher case mortality rates; additionally, outbreaks frequently occur in hospitals and long-term care facilities where most of the residents are older persons. Unfortunately, it has been stated that the COVID-19 pandemic has caused a medical collapse in some countries, resulting in the depletion of medical resources, such as ventilators, and triage based on chronological age. Furthermore, as some COVID-19 cases show a rapid deterioration of clinical symptoms and accordingly, the medical and long-term care staff cannot always confirm the patient's values and wishes in time, we are very concerned as to whether older patients are receiving the medical and long-term care services that they wish for. It was once again recognized that it is vital to implement advance care planning as early as possible before suffering from COVID-19. To this end, in August 2020, the Japan Geriatrics Society announced ethical recommendations for medical and long-term care for older persons and emphasized the importance of conducting advance care planning at earlier stages. Geriatr Gerontol Int 2020; 20: 1112-1119.

The Principles of Revised Clinical Guidelines about Palliative Sedation Therapy of the Japanese Society for Palliative Medicine.

Background: When the suffering of a terminally ill patient is intolerable and refractory, sedatives are sometimes used for symptom relief. Objective: To describe the main principles of revised Japanese clinical guidelines about palliative sedation therapy. Design: Consensus methods using the Delphi technique were used. Results: The main principles of the guidelines that were newly defined or developed are as follows: (1) palliative sedation was defined as "administration of sedatives for the purpose of alleviating refractory suffering" (excluding the aim of reducing patient consciousness); (2) palliative sedation was classified according to the method of administration of sedatives: respite sedation versus continuous sedation (including (continuous) proportional sedation and continuous deep sedation); (3) a description of state-of-the-art recommended treatments for difficult symptoms such as delirium, dyspnea, and pain before the symptom was determined as refractory was included; (4) the principle of proportionality was newly defined from an ethical point of view; and (5) families' consent was regarded as being desirable (mandatory in the previous version). Conclusions: We described the main principles of revised Japanese clinical guidelines about palliative sedation therapy. Further consensus building is necessary.

Japanese physicians' practice of withholding and withdrawing mechanical ventilation and artificial nutrition and hydration from older adults with very severe stroke.

Amid the lack of legislation or guidelines regarding withholding and withdrawing care in Japan, some physicians who have withdrawn mechanical ventilation from dying patients have recently been subjected to police investigations on suspicion of murder. Under the circumstances, we examined Japanese physicians' attitudes towards mechanical ventilation and artificial nutrition and hydration (ANH) as life-sustaining treatments (LST) to find out if they withhold or withdraw the LST when treating older adults with stroke-caused profound impairment with no hope for recovery. Face-to-face, in-depth interviews were conducted with 27 physicians ranging in age from 26 to 70 in 2004 mainly in the Tokyo metropolitan area. The study findings show that the informants held different views towards the two LST because most doctors considered ANH to be indispensable, while they did not think so for mechanical ventilation. Regarding the reasons that lead physicians to consider ANH is indispensable while mechanical ventilation is not, the following factors were identified: ANH's special status as food and water, ordinary/extraordinary, the level of technology, and sense of unnaturalness. Because of its indispensability, ANH is automatically provided, while mechanical ventilation could be withheld in some patients that the physicians have diagnosed to have no hope for recovery. The current legal framework in Japan, which poses legal risks for physicians when withdrawing care, have led some of the physicians to withdraw care in a secret manner, thus causing an unnecessary psychological burden on the physicians. This study indicated that the legal framework has possibly caused troubles in two ways: routinely providing patients with possibly unwanted mechanical ventilation and ANH, and conversely, prompting some doctors to withhold mechanical ventilation in some cases, thereby potentially depriving some patients of a chance to recover. The introduction of the practice of a trial treatment period may be more cogent, considering the inherent uncertainty of diagnoses. The findings of the study also indicated that the physician informants tended to view the value of maintaining the lives of non-communicative patients in terms of the relationships of such patients with others. The vulnerability of patients without strong relationships with others needs to be taken into consideration when compiling guidelines regarding withholding and withdrawing care in Japan.

Physicians' attitudes about artificial feeding in older patients with severe cognitive impairment in Japan: a qualitative study.

BACKGROUND: The question of whether to withhold artificial nutrition and hydration (ANH) from severely cognitively impaired older adults has remained nearly unexplored in Japan, where provision of ANH is considered standard care. The objective of this study was to identify and analyze factors related to the decision to provide ANH through percutaneous endoscopic gastrostomy (PEG) in older Japanese adults with severe cognitive impairment. METHODS: Retrospective, in-depth interviews with thirty physicians experienced in the care of older, bed-ridden, non-communicative patients with severe cognitive impairment. Interview content included questions about factors influencing the decision to provide or withhold ANH, concerns and dilemmas concerning ANH and the choice of PEG feeding as an ANH method. The process of data collection and analysis followed the Grounded Theory approach. RESULTS: Data analysis identified five factors that influence Japanese physicians' decision to provide ANH through PEG tubes: (1) the national health insurance system that allows elderly patients to become long-term hospital in-patients; (2) legal barriers with regard to limiting treatment, including the risk of prosecution; (3) emotional barriers, especially abhorrence of death by 'starvation'; (4) cultural values that promote family-oriented end-of-life decision making; and (5) reimbursement-related factors involved in the choice of PEG. However, a small number of physicians did offer patients' families the option of withholding ANH. These physicians shared certain characteristics, such as a different perception of ANH and repeated communication with families concerning end-of-life care. These qualities were found to reduce some of the effects of the factors that favor provision of ANH. CONCLUSION: The framework of Japan's medical-legal system unintentionally provides many physicians an incentive to routinely offer ANH for this patient group through PEG tubes. It seems apparent that end-of-life education should be provided to medical providers in Japan to change the automatic assumption that ANH must be provided.

Understanding treatment attitudes toward dementia: differences among community residents and health care professionals.

To examine how the severity of dementia affects attitudes to treatment preferences in a lay group of community residents and a group of medical care professionals who provide direct care to dementia affected patients. The participants were 259 community residents aged between 40 and 65, and 217 care professionals working at nursing homes or group homes. Respondents were randomly assigned to one of two scenarios involving moderate or severe dementia and each was asked questions about their preferences and attitudes to the employment of eight types of active treatments (ATs) to deal with a newly acquired illness as well as eight types of life-sustaining treatment (LST). Among the community residents, there were no significant differences in preferences toward any treatment items between the moderate dementia and severe dementia scenarios. Similarly, care professionals showed no significant differences in attitudes toward 15 of the 16 treatment items. The community residents had more negative attitudes than care professionals in attitudes to all types of LST, including four variations of AT that have a good chance of success. After dementia deprives an individual of decision-making capacity, progress of the disease has little effect on both community residents and care professionals' preferences. When discussing about end-of-life decision-making, care professionals need to be careful about the gaps in perception of good chance treatments with patients.