Attitude of health care professionals in clinical care of children in Japan

- Ichiro Matsuda M.D., Ph.D.,*, Shoju Onishi M.D., Ph.D.**
* Health Science University of Hokkaido, Graduate School of Nurses
** Takamatsu Junior College
*Address to contact: Ichiro Matsuda M.D.
Ezuko Institution for Developmental Disabilities, Ezumachi575, Kumamoto 862-0947,Japan
E-mail: imatsuda@bronze.ocn.ne.jp

Eubios Journal of Asian and International Bioethics 13 (2003), 186-9.


Abstract

 To seek the attitude of health care professionals regarding clinical practice of children, questionnaires were sent to 276 chief pediatricians and 136 chief pediatric nurses in medical school hospitals, children's hospitals and national hospitals. Replies were 69.2% and 66.9%, respectively. Over 70% of pediatric healthcare professionals addressed children's cognitive competence of lower grade elementary level ( 9-year-old) regarding their own body was considered reliable. Similarly, over 70% stated that for children with the same age they favor to explain of body condition and prognosis of children's illness or medical procedure in clinical practice, except in cases of life-threatening disease and administration of psychotropic drug. The consensus in clinical practice in children was similar between chief pediatrician and chief pediatric nurses. The next questionnaires were addressed to factors of clinical care with only informed consent, not with consent of the parents as in USA. The data received showed over 60% of pediatricians and nurses stated that additional consent of parents is necessary even if the adolescent wants the parents not to be informed, if the problem is a pregnancy, treatment for sexually transmitted diseases, alcoholism or drug addiction. These findings suggest that health care professionals favor to family-oriented decision rather than individual right-oriented decision in Japan.

 

Introduction

 Social forces tend to focus on decisions by physicians and parents, thus the moral responsibility of the children is diminished. [King and Cross, 1985]. Traditionally, informed consent is applied to the patients of legal age, except when the patient was incompetent. However, recently complex social changes resulted in acceptance of the idea that patient, even children and depending on their competent, have a right to know about their health and to know about available diagnostic procedure and treatment options. Thus informed consent or informed assent is generally required in practical application in pediatrics. [Forman EN, Ladd RE, 1995, Committee on Bioethics, 1995]. This survey was attempted to view the concepts of pediatric healthcare professionals in clinical practice.

 

Method

 In order to know attitude of health care professionals concerning clinical practice of children, questionnaires were sent to the chief pediatric nurses belonged to 136 medical school hospitals and children's hospitals in 2000 and the same questionnaires were sent to 136 chief pediatrician belonged to the same medical facilities in case of nurses' survey and additional143 chief pediatricians belonged to another national hospitals in 2001. Replies were procured from 66.9% (91/136) in the chief pediatric nurses and 69.2% (193/279) in the chief pediatricians. χ2 test was used for statistical analysis. 

 

Results

1, Health care professional and patient relationship in clinical practice in children

 (1) We asked at what age children could recognize their own body illness.

For 6-year-old children 41.7% of chief pediatrician (CP) and 51.7% of chief pediatric nurses (CPN) felt that the children could be competent judges of their own body condition, while for 9-year-olds these percentage rose to 73.7% (sum of percentages for children younger than six and for children between the age of six and nine inclusive from Table 1) of CP and 70.6% of CPN. No differences were found between CP and CPN in both situations.

 (2) Three cases (A to C) are proposed concerning the explanation of illness and prognosis to children; A; illness is treatable with complete recovery (e.g. mild fracture), B; illness which essentially non-life-threatening if immediately treated, but could possibly developed chronic illness (e.g. chronic renal disease); C; life-threatening disease or diseases where the prognosis for complete recovery is possibly poor (e.g. malignancy). 49.5% of CP and 48.6% of CPN believed that 6-year-olds should be informed of case A , while only 26.7% of CP and 37.2% of CPN believe this to be appropriate in case of B and 12.3% of CP and 22.3% of CPN in case C.

Statistically, the two latter responses were significantly lower than former responses (p<0.01) For 9-year-olds, the percentage of the respondents who believe children should be informed were 87.4%( sum of percentages for children younger than six and for children between the age of six and nine inclusive from Table 1) of CP and 87.3% of CPN in case A, 68.0% of CP and 73.2% of CPN in case B, and 35.0% of CP and 44.2% of CPN in case C. The last response was significantly lower than the former tow responses (p<0.05). No significant difference was obtained between CP and CPN, except the percentage for 6-year-olds in case of C. 

 (3) We asked from what age explanation should be given for obtaining informed assent in the following medical procedure (A to F); A: procedures where patient experiences pain (e.g. taking a blood) ,B: routine procedures ( e.g. medication),C: when administering psychotropic drugs for behavioral or emotional disorders, D: when giving corsets where patient experiences either a physical restriction of movement or a psychological trauma (e.g. shame),E: when performing orthopedic or general


Table 1: Health care professional and patient relationship in clinical practice in children

 

1. Concerning competence of children

Pediatricians   Pediatric nurses

Question (% yes)                               (n=193)           (n=91) 

Are children competent to judge of their own body illness?                                                 

6-year-old                         41.7%             51.7%

6-year-old -    9-year-old   32.0%            18.9%

 

2. At what age is it considered appropriate to inform children of illness and prognosis of their own diseases?

Pediatrician   Pediatric nurses

Questions (% yes )                             (n=193)           (n=91)

A: Treatable illness with completely recovery (e.g. fracture)

6-year-old                         49.5%             48.6%

6 to 9-year-olds                                 37.9%             38.7%

B: Illness which are essentially non-life-threatening,

  but could develop into chronic illness(e.g. renal disease)

6-year-old                         26.7%**                    37.2%**

6 to 9-year-olds                                 41.3%             36.0%

C: Life-threatening disease or disease where the prognosis

  for complete recovery is poor (e.g. malignancy)

6-year-old                         12.3%*  **    22.3%**

6 to 9-year-olds                                  22.7%            21.9%

* significant differences (p< 0.05) between pediatrician and pediatric nurses.

** significantly different from A (p< 0.01)

 

3. At what age should explanations be given by a healthcare professional for the following medical procedure?

Pediatrician   Pediatric nurses

 Questions (% yes)                              (n=193)          (n=91)

A: Procedures where patient experiences pain (e.g. taking a blood)

6-year-old                          61.1%                        68.2%

6 to 9-year-olds                                  20.1%            14.8%

B: Routine procedures ( e.g. medication)

6-year-old                         56.5%             65.9%

6 to 9-year-olds                                 24.8%             20.4%

C: When administering psychotropic drugs for behavioral

  or emotional disorders                  

6-year-old                         19.6%*                       25.9%*

6 to 9-year-olds                                 33.8%             29.4%

D: When giving corsets where patient experiences either a physical restriction of movement or a psychological trauma (e.g. shame)

6-year-old                         49.5%             56.3%

6 to 9-year-olds                                 33.2%             28.7%

E: When performing orthopedic or general surgery

6-year-old                         49.5%             52.3%

6 to 9-year-olds                                 28.8%             29.5%

F: When performing examination for repeated abdominal pain

6-year-old                         51.7%             54.0%

6 to 9-year-olds                                 29.5%             26.4%

* significant differences (p<0.05) between C and others ( A, B, D, E and F)

 

surgery, F: when performing examination for repeated abdominal pain. In those cases, for children until 6 years of age the percentages of respondents in favor of the explanations were only significantly reduced in case of C. Similar responses were obtained for children for age 9 as follows; 81.2%(sum of percentages for children younger than six and for children between the age of six and nine inclusive from Table 1) of CP and 83.0% of CPN in case A, 81.3%of CP and 86.3% of CPN in case B, 53.4%of CP and 55.3% of CPN in case of C, 82.7% of CP and 85.0% of CPN in case of D, 78.3% of CP and 81.8% of CPN in case of E, 81.2% of CP and 80.4% of CPN in case of F. The differences for 9-year-olds between percentages in case C (psychotropic medication) and those in other situations were significant both in CP and CPN (p<0.01).

 

Table 2: Informed consent from the parents in the treatment for their adolescent

Pediatrician (n=193)     Pediatric nurse (n=91)

Questions*** ( % yes )         1          2          1          2

A : They are financially independent             

69.7% 37.3% **  84.1% * 46.0%**

B: They are living separately             

74.7% 50.5% ** 93.1% *     64.4%**

C: They are married    36.2%  25.4% ** 50.0% *     29.9%**

D; They are already have children                 

45.1% 33.5% ** 58.6% *     45.6%**

E: They are pregnant   83.2%  65.2% ** 88.4%        81.1%

F: They are receiving treatment for STDs     

68.8% 55.3% ** 70.9%        60.1%

G: They are receiving treatment for    alcoholism or drug addiction

86.8% 73.9% ** 92.2%        80.0%

***Questions

1: Is additional parent consent necessary for the treatment for adolescent?

2: Do you require additional parents' consent, even if adolescent ask to keep their privacy from parents?

 

STD: sexually transmitted diseases

*  significant difference (P<0.01 or <0.05) between pediatrician and pediatric nurses in question 1

** significant difference (P<0.01 or <0.05) between 1 and 2

 

2. Informed consent from the parents in the treatment for their adolescent

The following cases (A to G) are proposed: A: the child is financially independent, B: the child is living apart from parents, C: two individuals are married, D: two individuals have a child, E: the girl is pregnant, F: treatment for sexually transmitted disease is required, G: treatment for alcoholism or drug addiction is required. Under these situations, we asked tow questions as follows: the first question is; "when the informed consent is obtained from the adolescent, and if parents' consent is needed for treatment". The second question is; " what is your response if asked not to reveal the situation to parents". To the first question the percentages of chief pediatric nurses in favor of getting additional parents' consent were much higher than the percentages of such responses from chief pediatricians (P<0.01 or <0.05) for situations A to D, while for the situations E to G there were no significantly different. To the second question numbers of chief pediatricians requiring additional consent from parents is significantly reduced in all situations (P<0.01 or <0.05), but for E and G over 60% of the chief pediatrician said parents' consent was required. For chief nurses, numbers requiring additional parents' consent were reduced in the situation A to D only. But for B, 64.4% of them said parents' consent was necessary.

 

Discussion

 A central issue of requiring informed consent or informed assent in pediatric practice is how to communicate to children concerning the information of their own illness, treatment and prognosis and how to ask child's participation in the decision making process. The recognition about children's developing capacity to understand their body condition and the obtained information seems to be quite similar between pediatricians and pediatric nurses, as observed in question (1) and in questions (2) and (3) in the first section: health care professional and patient relationship in clinical practice in children. The conclusion at the question (1) that children's cognitive competence of lower grade elementary school ( 9-year-old) regarding their own body was considered reliable is in accordance with another answers in question (2) and (3) except for in case of life-threatening disease in question (2) and administering psychotropic drugs for behavioral or emotional disorders in question (3). Essentially, our data is corresponding to the official comments of American Academy of Pediatrics. They encourage physicians to seek the assent of the patient as well as the informed permission of parent:  1) vein puncture for diagnostic study in 9-year-old; 2) diagnostic testing for recurrent abdominal pain in 10-year-old; 3) psychotropic medication to control an attention-deficit disorder in a third grader; 4) an orthopedic device to manage scoliosis in an 11-year-old; 5) an "alarm" system to treat nocturnal enuresis in 8-year-old; or 6) surgical repair of malformed ear in 12-year-old [Committee on bioethics,1995]. Thus, it is concluded that when considering the level of understanding of children under the ages of 9, Japanese healthcare professionals probably believed it is to be easier to explain diseases where complete recovery is certain (e.g. mild fracture), whereas slightly more difficult with chronic diseases where complete recovery is difficult (e.g.chronic renal disease), and furthermore definitely considered difficult in the life-threatening illness. For psychotropic medication, healthcare professionals will have concerns about comprehension of communicated information to mentally ill children. Child developmentalists formerly thought that normal children pass through certain cognitive stages and that at each stage they exhibit all of the characteristics identified with it. Instead, right now many developmentalist believe that children's cognition progress via variety of developmental trends rather than clearly defined stage [Likin,1993].Crisp, Ungere and Goodnow[1996] have found that personal experience with a chronic illness can enhance a child's understanding of his or her own illness. Generally experience is the most important factor of the development of comprehension ability in children. The life-threatening illness in childhood is filled with most serious ethical issues. The central issues are those involved with a child's participation in the decision-making process and with open communication of correct information about the illness and treatments to children. Kunin [1997] suggested that a multidimensional approach which focuses on establishing a strong working alliance between the healthcare team and the patient's family, can help to avoid or resolve potential ethical and clinical conflict.

 In USA, there are laws by which adolescents can make independent decisions concerning their own health. First, certain minors are deemed "emancipated" and treated as adults for all purposes. Definitions of the "emancipated" minor include those who are: 1) self-supporting and /or not living at home; 2) married, 3) pregnant or parent; 4) in the military; or 5) declared to be emancipated by a court [Sigman and O'Connor, 1991, Committee on Bioethics, 1995]. Second, many states give decision making authority (without the need for parental involvement) to some minors who are otherwise un-emancipated but who have decision making capacity ("matured minors") or who is seeking treatment for certain medical conditions, such as sexually transmitted diseases, pregnancy, and drug or alcohol abuse [Sigman and O'Connor, 1991, Forman and Ladd, 1995, Committee on Bioethics, 1995]. American Academy of Pediatrics encourages pediatricians to obtain the informed consent of the patient for request of oral contraceptives for fertility control in 17-year-olds, but no additional parental permission. However, they encourage parental involvement in such cases, as appropriate [Committee on bioethics, 1995]. In 1996, the Academy reaffirms its position that the rights of adolescents to confidential care when considering abortion should be protected. However, concerning with the issues of sexual and reproductive health care for adolescents, L.F. Ross argued that these statutes inappropriately exclude the majority of parents who are able and willing to make these decisions with and on behalf of their children [Ross 1998]. Many of the health care professionals participated in this present survey would not recognize the law designated for clinical practice in adolescents in the USA. In Japan even for a blood sample collecting for gene analysis parents' consent is required in children under 20 years except in the case of married adolescents [Guidelines for Human Genome Research, 2002]. Married couples above the age 18 in males and over 16 years in females are dealt with as adults legally [Matsuda, 2001]. Except for this situation no regulation or discussion has taken placed in the case of clinical practice of adolescence in Japan. The some discrepancies of the attitude between pediatricians and pediatric nurses in case of A: children are financially independent, B: they are living separately, C: they are married, and D: they already have child, could be speculated as depending on different ideas of fathers (male) and mothers (female). Mothers will be more responsible than fathers in case of their own children. An analogous result was obtained in the second question.

When an adolescent asked for protection of own privacy from his or her parents, a significant number of pediatricians tried to meet the requests in all situations, but nurses did so only in the limited situations. Nevertheless in cases of E: they are pregnant, F: they are receiving treatment for sexually transmitted disease, and G: they are receiving treatment for alcoholism or drug addiction, more than half of the health caregivers, including pediatricians and pediatric nurses, disagreed to treat them without additional parents' consent, even if adolescents asked for their privacy.

Thus, general health professionals try to respect adolescent's autonomy, but they also think that the most serious Issues should be discussed within the family. In non-western countries " rights-talk" generally does not exist prior to the introduction of Western Idea [WHO, 2000]. Asian cultural approaches to interpersonal relations reject self-interest, individualism and contractualism, and instead tends to embrace Confucian ethics which emphasize benevolence and caring for others. Confucianism fosters the belief in Asian countries that because the birth and development of an individual is so dependent upon others, in particular to one's own blood relatives, he or she has a duty to care for them. Within Asia these attitudes will not manifest themselves in the same way in all countries, such as Korea, China and Japan, especially modern Japan is becoming more westernized. However, it is possible the deeply held beliefs of the Japanese will not be easily changed. The issues of decision-making in adolescent care should be discussed in near future in Japan.

 

Acknowledgements

 This survey is supported by a grant from the Ministry of Health, Welfare and Labor of Japan (20001) and grant from Health Science University of Hokkaido.

 

References

American  Academy of Pediatrics (1996). The adolescent's right to confidential care when considering abortion. Pediatrics 97:746-751

Committee on Bioethics (1995). Informed consent, parental permission, and assent in pediatric practice. Pediatrics 95:314-317

Crip J, Ungerer JA, Goodnow JJ (1996). The impact of experience on chilren's understanding of illness. J pediatric Psychology. 21:57-72.

Forman EN, Ladd RE(1995). Ethical dilemmas in pediatrics. New York, University Press of America Inc,

Guidelines for Human Genome Research in Japan (2002). http://www2.ncc.go.jp/elsi/

King NMP, Cross AW (1985). Children as decision making ; guidelines for pediatricians. J Pediatr. 115:10-16

Kunin H(1997). Ethical issues in pediatric life-threatening illness: Dilemmas of consent, assent, and communication Ethics & Behavior 7:43-57

Leikin S(1993). Minor's assent, consent or dissent to medical research. IRB 15(2):1-7

Matsuda I (2001). Adolescents' values and issues of clinical practice in Japan. Shounika-Rinnshou (in Japanese).64:3-6

Ross L. F.(1998) Children, families, and health care decision making. Clarendon Press Oxford pp152-4169

Sigman GS, O'Connor C(1991). Exploration for physicians of the mature minor doctrine. J Pediatr. 119:520-525

WHO (2001). Review of ethical issues in medical genetics.


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