Elsevier

Health Policy

Volume 98, Issues 2–3, December 2010, Pages 98-106
Health Policy

Life sustaining treatment at end-of-life in Japan: Do the perspectives of the general public reflect those of the bereaved of patients who had died in hospitals?

https://doi.org/10.1016/j.healthpol.2010.05.016Get rights and content

Abstract

Objective

To compare the perspectives of the general public and of the bereaved of patients who had died in hospitals on life sustaining treatment (LST).

Method

Two self-administered questionnaire surveys were conducted in a city in Japan. The general public survey was mailed to a stratified sample of 1000 residents aged 20 and over, of which 419 (42%) responded. The bereaved survey was mailed to 427 family members of patients who had died in the city's 6 hospitals, of which 205 (48%) responded.

Results

In the general public survey, 44% had discussed LST with their family; 30% thought physicians discussed them with the patient or family; if a family member were to have cancer 57% did not want LST, if frail, 69%. In the bereaved survey, 39% had discussed LST with the patient; 80% had the respondent's preferences followed by the physician; 23% had not wanted LST for cancer, 39% for a frail condition.

Conclusion

The LST preferences of a family member were known by less than half of the respondents in both surveys. When compared with the general public, the bereaved evaluated the physician's attitude more positively and the proportion who did not want LST was less.

Introduction

The extent of life sustaining treatment (LST) that should be provided at end-of-life has been a controversial topic because there is a dilemma between “the right to die” and “the right to live”. According to the western bioethics principle, the patient should be central in making this decision [1]. However, not every patient is able to do so, and preferences made in the past might change [2]. Some patients may want their family and the physician to make the decision [3], while physicians may involve the family so as to create a broad basis for the decision making process [4]. The role of the family has been particularly important in Japan because physicians have tended to discuss end-of-life issues with family members before and often more extensively than with the patient [5], [6]. Thus, from a western perspective, it becomes even more important for the patient to have had detailed discussions with family members about the extent of LST prior to being faced with an end-of-life condition. However, according to the “2008 National Survey on End-of-Life Care” (henceforth referred to as the “National Survey”), although 48% of the general public replied that they did have a discussion, only 4% had done so in detail [7]. Advance directives have not been legislated and, according to one report, less than 3% had actually written a living will [8]. These percentages are low compared with 84% for discussing with the family and 36% for writing a living will in a similar population-based study made in California [9].

Physicians and families in Japan have been caught between what has come to be accepted as the norm, the individual's preference should be adhered, and the actual situation, the individual's preferences not being known. This situation has been exacerbated by the fact that few physicians have received training in end-of-life care [10]: in the National Survey, 84% replied that they had experienced problems or were worried about end-of-life care. One of their immediate concerns would be criminal prosecution. In 2009, the Supreme Court upheld the lower court's verdict of a suspended sentence to a physician who had terminated LST, and subsequently given the patient a lethal dose of a muscle relaxant. Although the family had given consent, it was judged that the information provided by the physician had been insufficient and the administration of the lethal dose would be considered as murder, albeit with extenuating circumstances [11].

This verdict and other prosecutions of physicians who had terminated LST have received wide media coverage [12]. It has exacerbated the fear that physicians may disregard the preferences of the patient and the family: in the National Survey, only 8% thought that physicians discussed fully with the patient. However, little has been done at the policy level to deal with the fundamental issues. The limited resources for end-of-life care have been targeted at establishing palliative inpatient care units. These units may only admit patients diagnosed with either cancer or AIDS by health insurance regulations, and although their number has increased, the percentage of deaths from cancer that occur in these units is still only 6% [13]. There has not been much development in the infrastructure for providing end-of-life care in the community and nursing homes. Meanwhile, the proportion of deaths that occur in hospitals has increased to 79% [14], probably the highest in the world [15], [16].

One way of possibly mitigating the general public's apprehensions about end-of-life care is to provide them with more information on how it is actually being provided in hospitals and experienced by bereaved family members. To our knowledge, there has been only one population-based study made in Japan which focused on comparing the knowledge and beliefs of the bereaved about LST in palliative care units with that in other sites [17]. In our study, we compare the perspectives of the general public for two hypothetical end-of-life conditions with the actual experience of bereaved family members. Since researchers are not permitted access to individual death certificate data in Japan, the only way we could contact the bereaved was through hospitals. We chose a city where we were able to obtain the cooperation of all the hospitals, except for one psychiatric hospital, to conduct the survey. For the general public, we took a stratified sample of the city's residents and used the same questions and method as that of the National Survey in order to verify the extent to which the two might differ.

Section snippets

Survey site

We conducted our survey in the city of Kamogawa which is situated about 100 km from the centre of Tokyo on the sea-side and is a relatively isolated community. The population is 36,650 of which the proportion 65 and over is 30.2% and higher than the national level of 22.2% (2008) [18]. Health care services are readily accessible in Japan [19], and the city has more facilities than the national average with one acute hospital, two hospitals having both acute and long-term care beds, two long-term

Public survey

Table 1 shows the results of the public survey, compared with that of the National Survey. Our age distribution was older reflecting the demography of our site. We recalculated our results so that they would reflect the gender and age composition of the National Survey, but the percentages changed by less than one percent for all of the items so the raw percentages were used and displayed. The other variables did not show significant differences, with the exceptions of the higher proportions of

Discussion

The objective of our study was to investigate whether the perspectives of the general public on LST at end-of-life are reflected in the experiences of the bereaved. Since the end-of-life state was hypothetical for the former and actual for the latter, we aligned the questions in Table 5 so that they would be substantively similar. The respondents’ gender and age compositions were basically the same for the two surveys. The percentage of those who have discussed about LST with the family in the

Conclusion

Both the Public and bereaved surveys indicated that the family would know the preferences in less than half of the cases. Where the two surveys diverged was in their evaluation of the physician's behaviour: in the public survey, only 39% responded that they thought physicians would discuss with family, but in the bereaved survey, 80% responded that they had actually done so. The proportion not wanting LST also diverged, being twice as high in the public survey compared with the bereaved survey

Acknowledgement

Japan's Ministry of Health, Labour and Welfare provided funds from the Project on Promoting Elderly Health.

References (29)

  • A. Asai et al.

    Attitudes of Japanese and Japanese-American physicians towards life-sustaining treatment

    Lancet

    (1995)
  • K. Aita et al.

    Withdrawal of care in Japan

    Lancet

    (2006)
  • T. Morita et al.

    Knowledge and beliefs about end-of-life care and the effects of specialized palliative care: a population-based survey in Japan

    Journal of Pain and Symptom Management

    (2006)
  • J.H.T. Karlawish et al.

    Ethical issue

  • M.N. Wittink et al.

    Stability of preferences for end-of-life treatment after 3 years of follow-up: the Johns Hopkins Precursors Study

    Archives of Internal Medicine

    (2008)
  • C.M. Puchalski et al.

    Patients who want their family and physician to make resuscitation decisions for them: observations from SUPPORT and HELP. Study to Understand Prognoses and Preferences for Outcomes and Risks of Treatment. Hospitalized Elderly Longitudinal Project

    Journal of the American Geriatrics Society

    (2000)
  • A.M. The et al.

    Withholding the artificial administration of fluids and food from elderly patients with dementia: ethnographic study

    BMJ

    (2002)
  • S. Matsumura et al.

    Acculturation of attitudes toward end-of-life care: a cross-cultural survey of Japanese Americans and Japanese

    Journal of General Internal Medicine

    (2002)
  • Ministry of Health, Labour & Welfare

    Heisei 19 nendo shumatsuki iryo ni kansuru chousa houkoku [F/Y 2008 Survey Report on end of life care]

    (2008)
  • H. Miyata et al.

    Survey of the general public's attitudes toward advance directives in Japan: how to respect patients’ preferences

    BMC Medical Ethics

    (2006)
  • Lake Research Partners

    Attitudes toward end-of-life care in California

    (2006)
  • Supreme Court: Decision to reject the appeal of the lower court

    (2009)
  • The Asahi Shimbun. Shumatsuki Iryou Tsukinu Nayami [Unabated torments about end-of-life care]

    (December 2009)
  • M. Miyashita et al.

    Factors contributing to evaluation of a good death from the bereaved family member's perspective

    Psychooncology

    (2008)
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