Communication between patients and physicians about terminal care: A survey in Japan

doi:10.1016/0277-9536(93)90235-V

Social Science & Medicine

Volume 36, Issue 9, May 1993, Pages 1151-1159

https://doi.org/10.1016/0277-9536(93)90235-V Get rights and content

Abstract

We assessed patient-physician communication about terminal care in Japan by examining the accuracy of physicians' estimation of their patients' preferences as regards (1) information about diagnosis and prognosis, (2) the place of death and (3) the therapeutic strategy at terminal stage (life prolongation vs pain control). We conducted a questionnaire survey on inpatients (n = 201) in three hospitals; two in rural areas (Nagano and Okinawa) and one in an urban area (Tokyo). Simultaneously we asked physicians (n = 40) in charge of the patients to estimate their attitudes. The accuracy of physicians' estimation was assessed by correct estimation rate (CER) and kappa coefficient.

(1) Approximately 80% of the patients preferred to have candid information about diagnosis and prognosis, regardless of the nature of their disease. The physicians were correct in estimation only in about half of the cases. About one sixth of the physicians' guesses were in opposite direction, while about one third failed to make any estimation at all. Thus, the overall CER was 42%, 57% and 62% in Nagano, Okinawa and Tokyo respectively. (2) While 70% of the patients wished to meet their death at home, the physicians estimated this fact correctly in less than half of the cases. The physicians frequently could not make any estimation (CER: 21%, 36% and 40% respectively). (3) Two thirds of the patients preferred pain control over life prolongation. Again, CER remained in the neighborhood of 50% (CER: 49%, 49% and 64% respectively). The analysis by kappa coefficients showed that the concordance between patients' preferences and physicians' estimation was not far from a figure expected by chance alone.

Above findings indicate that physicians had practically no knowledge of their patients' preferences and strongly suggest absence of effective communications between patients and physicians concerning terminal care. This situation inevitably enhances physicians' effort toward prolongation of patients' life at the expense of quality of life, and in part accounts for expansion of medical expenditure during the least effective stage of therapy.

References (48)

J. McCusker
The terminal period of cancer: Definition and descriptive epidemiology
J. Chron. Dis.
(1984)
H. Hattori et al.
The patient's right to information in Japan: Legal rules and doctor's opinions
Soc. Sci. Med.
(1991)
G. Ohi et al.
Why are cadaveric renal transplants so hard to find in Japan? An analysis of economic and attitudinal aspects
Hlth Policy
(1986)
S. Katz et al.
Active life expectancy
N. Engl. J. Med.
(1983)
Department of Health and Welfare
Vital Statistics 1985
(1987)
Department of Health and Welfare
National Health Survey 1985
(1987)
G. Ohi et al.
Medical technology and its cost performance: Usefulness and limitation of economic analysis of biotechnology
Teikyo Med. J.
(1986)
D.H. Novack et al.
Changes in physicians' attitudes toward telling the cancer patient
JAMA
(1979)
G. Morrow et al.
A simple technique for increasing cancer patients' knowledge of informed consent to treatment
Cancer
(1978)

G. Ohi

Terminal Care

(1989)

K. Nagata

Problems related to tell the truth to cancer patients

M. Okayasu

Telling the truth to cancer patients

Med. Human

(1987)

T. Doi

Anatomy of Dependence

(1971)

L.T. Doi

Some thoughts on helplessness and the desire to be loved

Psychiatry

(1963)

M.G. Greene et al.

Concordance between physicians and their older and younger patients in the primary care medical encounter

Gerontologist

(1989)

E.M. Rogers et al.

Homophily-heterophily: Relational concepts for communication research

Publ. Opinion Q.

(1970)

M. Higa

The ceremonial occasions in Okinawa

Linguistics

(1983)

K. Hasegawa et al.

A simple assessment test for intellectual impairment of the elderly

Psychiat. Med.

(1974)

E. Pfeiffer

A short portable mental status questionnaire for the assessment of organic brain deficit in elderly patients

J. Am. Geriat. Soc.

(1975)

W.W.K. Zung

A self-rating depression scale

Arch. Gen. Psychiat.

(1965)

K. Fukuda et al.

A study on a self-rating depression scale

J. Psychiat. Neurol.

(1973)

J.R. Landis et al.

The measurement of observer agreement for categorical data

Biometrics

(1977)

Y. Kobayashi et al.

The economic analysis of home and hospital care for terminally ill patients

Jap. J. Publ. Hlth

(1988)

Cited by (85)

Mortality Conversations Between Male Veterans and Their Providers Prior to Dysvascular Lower Extremity Amputation
2023, Annals of Vascular Surgery
Among patients facing lower extremity amputation due to dysvascular disease, the mortality risk is very high. Given this, as well as the importance of a patient-centered approach to medical care, informing patients about their possible risk of dying may be important during preoperative shared decision-making. The goal of this investigation was to gain an understanding of patient and provider experiences discussing mortality within the context of amputation within the Veterans Health Administration.
Semistructured interviews were performed with Veterans with peripheral arterial disease and/or diabetes, vascular and podiatric surgeons, and physical medicine and rehabilitation physicians. Interviews were analyzed using team-based content analysis to identify themes related to amputation-level decisions.
We interviewed 22 patients and 21 surgeons and physicians and identified 3 themes related to conversations around mortality: (1) both patients and providers report that mortality conversations are not common prior to amputation; (2) while most providers find value in mortality conversations, some express concerns around engaging in these discussions with patients; and (3) some patients perceive mortality conversations as unnecessary, but many are open to engaging in the conversation.
Providers may benefit from introducing the topic with patients, including providing the context for why mortality conversations may be valuable, with the understanding that patients can always decline to participate should they not be interested or comfortable discussing this issue.
Factors that influence the participation of healthcare professionals in advance care planning for patients with terminal cancer: A nationwide survey in Taiwan
2010, Social Science and Medicine
Citation Excerpt :
In addition, physicians often misunderstand seriously ill patients’ resuscitation preferences, especially preference to forgo CPR. ( Kai et al., 1993) Since patients who prefer to forgo CPR may receive unwanted treatment when their wishes are misunderstood by healthcare practitioners, the factors that affect healthcare professionals’ communication of treatment preferences with the patients are important issues for study. ( Tang, Liu, Lai, Liu, & Chen, 2005) However, only a few studies have explored physicians’ or nurses’ knowledge of ADs, their attitudes toward ADs, or their experiences with ADs. (
A nationwide study was undertaken to investigate participation in advance care planning (ACP) by cancer care professionals following the enactment of the Natural Death Act in Taiwan in 2000. This multi-center study surveyed 600 physicians and nurses working in oncology care wards or palliative care units using a structured mailed questionnaire. Logistic regression analysis revealed that working in a hospice, attitudes about the Natural Death Act and knowledge about the Natural Death Act were three independent factors that positively influenced the participation in ACP. The results demonstrate that the enactment of the Natural Death Act in Taiwan contributes to promoting the participation in ACP. Educating cancer care professionals about practicing palliative care and building positive attitudes toward the Act should be strongly encouraged.
Physicians' psychosocial barriers to different modes of withdrawal of life support in critical care: A qualitative study in Japan
2010, Social Science and Medicine
Citation Excerpt :
The physicians perceive a soft landing as a way to help the family accept the patient's death. Thus, a family-oriented end-of-life care was observed in this study, as was previously reported in Japan (Aita et al., 2008; Aita, Takahashi, Miyata, & Kai, 2007; Akabayashi, Fetters, & Elwyn, 1999; Asai et al., 1995; Hoshino, 1997; Kai, Ohi, & Yano, 1993; Kimura, 1998; Long, 1999). In a similar attempt to support the family at the end-of-life clinical settings, Japanese physicians often perform cardiopulmonary resuscitation for the dying patient with the sole purpose of “keeping the patient alive” so that family members can be called and come to the hospital to be at the patient's bedside at the time of death (Asai, et al., 1997; Fetters & Danis, 2002; Long, 2004).
Despite a number of guidelines issued in Anglo-American countries over the past few decades for forgoing treatment stating that there is no ethically relevant difference between withholding and withdrawing life-sustaining treatments (LST), it is recognized that many healthcare professionals in Japan as well as some of their western counterparts do not agree with this statement. This research was conducted to investigate the barriers that prevent physicians from withdrawing specific LST in critical care settings, focusing mainly on the modes of withdrawal of LST, in what the authors believe was the first study of its kind anywhere in the world. In 2006–2007, in-depth, face-to-face, semistructured interviews were conducted with 35 physicians working at emergency and critical care facilities across Japan. We elicited their experiences, attitudes, and perceptions regarding withdrawal of mechanical ventilation and other LST. The process of data analysis followed the grounded theory approach. We found that the psychosocial resistance of physicians to withdrawal of artificial devices varied according to the modes of withdrawal, showing a strong resistance to withdrawal of mechanical ventilation that requires physicians to halt the treatment when continuation of its mechanical operation is possible. However, there was little resistance to the withdrawal of percutaneous cardiopulmonary support and artificial liver support when their continuation was mechanically or physiologically impossible. The physicians shared a desire for a “soft landing” of the patient, that is, a slow and gradual death without drastic and immediate changes, which serves the psychosocial needs of the people surrounding the patient. For that purpose, vasopressors were often withheld and withdrawn. The findings suggest what the Japanese physicians avoid is not what they call a life-shortening act but an act that would not lead to a soft landing, or a slow death that looks ‘natural’ in the eyes of those surrounding the patient. The purpose of constructing such a final scene is believed to fulfill the psychosocial needs of the patient's family and the physicians, who emphasize on how death feels to those surrounding the patient. Unless withdrawing LST would lead to a soft landing, Japanese clinicians, who recognize that the results of withdrawing LST affect not only the patient but those around the patient, are likely to feel that there is an ethically relevant difference between withholding and withdrawing LST.
Japanese physicians' practice of withholding and withdrawing mechanical ventilation and artificial nutrition and hydration from older adults with very severe stroke
2008, Archives of Gerontology and Geriatrics
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.
Association between physicians' communicative behaviors and judges' decisions in lawsuits on negligent care
2007, Health Policy
Although findings of an association between physician communicative behaviors and the quality of health care have accumulated, the relationship between physician explanatory behaviors and negligent care has not been examined. The purpose of the study is to explore the association between physicians’ explanatory behaviors and judges’ decisions in lawsuits on negligent care.
We analyzed the decisions made by 10 of the 47 district courts in Japan between 1986 and 1998. We employed two types of linear model to examine the association between physician explanatory behaviors and findings of medical negligence.
The quality of a physician's explanatory behaviors, together with listening and talking to the patient or family, was related to decreased probability of a court decision of negligent care. However, explaining and listening to patients or their families were also related to the increased level of compensation.
The results imply that physician's explanatory behaviors accompanied by explaining and listening to patients or their families markedly reduces the risk of a negligent care decision. However, more detailed communication of the facts about a case was associated with an increased level of compensation in the context of cases filed for medical negligence.
Discrepant Perceptions About End-of-Life Communication: A Systematic Review
2007, Journal of Pain and Symptom Management
Citation Excerpt :
An Australian study found that detailed technical information about treatments was often provided, but patients felt that this was more often to justify treatments than to provide information.14 A Japanese study found that physicians underestimated the patient's desire for information.15 Five studies reported on caregivers (of patients with advanced cancer in four studies and of stroke patients in one study).
Little research has compared the perceptions of health professionals (HPs), patients, and caregivers about the communication of prognostic information. The objectives of this literature review were to determine 1) patient and caregiver perceptions of levels of information received about prognosis and end-of-life (EoL) issues regarding a life-limiting illness; 2) patient perceptions of and factors related to their understanding and awareness of prognosis; 3) HPs' perceptions of patients' wishes about disclosure of prognosis and factors related to their decision whether to disclose; and 4) concordance between HPs and patients/caregivers regarding the information given by HPs about prognostic and EoL issues. Relevant studies meeting the inclusion criteria were identified by searching computerized databases (MEDLINE, EMBASE, CINAHL, PsychINFO, Cochrane Register of Controlled Trials [Central]) up to November 2004. The reference lists of identified studies were hand searched for further relevant studies. Inclusion criteria were studies of any design evaluating communication of prognostic information that included adult patients with an advanced, life-limiting illness; their caregivers; and qualified HPs. Fifty-one studies were identified. There was a large discrepancy between patients/caregivers and HPs regarding the amount of information they believed had been given. Patients' understanding and awareness of information received conflicted with the HPs' perceptions of patients' understanding and awareness of the information that had been given. HPs tended to underestimate patients' need for information and overestimate patients' understanding and awareness of their prognosis and EoL issues. HPs need to repeatedly check patients' understanding and preferences for information.

View all citing articles on Scopus

View full text

Communication between patients and physicians about terminal care: A survey in Japan

Abstract

J. Chron. Dis.

Soc. Sci. Med.

Hlth Policy

Active life expectancy

N. Engl. J. Med.

Vital Statistics 1985

National Health Survey 1985

Medical technology and its cost performance: Usefulness and limitation of economic analysis of biotechnology

Teikyo Med. J.

Changes in physicians' attitudes toward telling the cancer patient

JAMA

A simple technique for increasing cancer patients' knowledge of informed consent to treatment

Cancer