| Literature DB >> 31431444 |
Momoko Sasazuki1,2, Yasunari Sakai3, Ryutaro Kira4, Naoko Toda1, Yuko Ichimiya1, Satoshi Akamine1, Michiko Torio1, Yoshito Ishizaki1, Masafumi Sanefuji1, Miho Narama5, Koichiro Itai6, Toshiro Hara7, Hidetoshi Takada8, Yoshiyuki Kizawa9, Shouichi Ohga1.
Abstract
OBJECTIVE: To delineate the critical decision-making processes that paediatricians apply when treating children with life-threatening conditions and the psychosocial experience of paediatricians involved in such care.Entities:
Keywords: decision making; dilemma; medical education; pediatrician; qualitative research
Mesh:
Year: 2019 PMID: 31431444 PMCID: PMC6707677 DOI: 10.1136/bmjopen-2018-026579
Source DB: PubMed Journal: BMJ Open ISSN: 2044-6055 Impact factor: 2.692
Participant demographics
| Demographics | Variable | Number |
| Sex | Male | 12+2* |
| Female | 1 | |
| Age | 30–34 | 1 |
| 35–39 | 6 | |
| 40–44 | 5+1 | |
| 45–49 | 0+1 | |
| 50–54 | 1 | |
| Subspecialty | Paediatric intensive care | 3 |
| Paediatric cardiology | 1+1 | |
| Neonatology | 3 | |
| Paediatric neurology | 4 | |
| Paediatric oncology | 2+1 | |
| Geographic region | Hokuriku | 1 |
| Kanto | 3+1 | |
| Kansai | 2 | |
| Kyushu | 7+1 |
*The number after the plus (+) indicates the number of participants who were recruited for the validation phase.
The five main categories of paediatricians’ dilemmas and their subcategories
| Category | Subcategory | Ethical (E) or practical (P) components |
| I. Paediatricians’ convictions | 1. Lack of confidence. | P>E |
| 2. Bearing heavy responsibility for the child’s life. | P>E | |
| 3. Fear of the child dying. | P>E | |
| 4. Hesitation about discussing the inevitable death of the child with the child’s parents. | P>E | |
| 5. Wanting to be correct as a doctor. | P>E | |
| 6. Not wanting to be hurt. | P>E | |
| 7. Not wanting to be wrong or blamed. | P>E | |
| 8. Recognising the limitation of an individual physician’s ability to assure the child’s happiness. | E>P | |
| 9. Need for humanity as a paediatrician in being responsible for a child’s life. | E>P | |
| 10. Being unable to accept the idea of withholding life-sustaining treatment for a child. | E>P | |
| 11. Uncertainty regarding the physician’s role in decision making. | P>E | |
| 12. Recognition of self-righteousness in decision-making. | E>P | |
| 13. Contradictions in withdrawing treatment against one’s own intentions. | E>P | |
| 14. Difficulty in talking about the inevitable death or severe prognosis of a child while recognising its importance. | P>E | |
| 15. Sense of responsibility in making the final decision for the child as the attending physician. | P>E | |
| 16. Lack of education and knowledge about treatment, strategy of decision-making and medical resources for a child with a life-threatening condition. | P>E | |
| 17. Lack of experience in treating a child with a life-threatening condition. | P>E | |
| II. The quest for the best interests of patients | 1. Wanting to act in the child’s best interests. | E>P |
| 2. Difficulty in determining the child’s best interests. | E>P | |
| 3. Difficulty in imaging the pain of a child with neuromuscular disease. | P>E | |
| III. The quest for medical appropriate plans | 1. Uncertainty of the prognosis. | P>E |
| 2. Difficulty in evaluating the validity of treatment. | P>E | |
| 3. Lack of data to support making appropriate plans. | P>E | |
| 4. Criticism concerning unusual plans and non-standard care. | P>E | |
| 5. Lack of unified correct answers. | P>E | |
| 6. Reluctance in refraining from offering a feasible plan because of a child’s severe disability. | P>E | |
| 7. Importance of accurate evaluation in recognising the inevitable death and limited time remaining to a child with a life-threatening condition. | E>P | |
| 8. Difficulty in making the right decision in a limited time frame. | P>E | |
| IV. Confronting parents and families | 1. Difficulty in dealing with parents who poorly understand the situation with their child. | P>E |
| 2. Difficulty in dealing with parents who have unconventional thoughts. | P>E | |
| 3. Knowing the difference among families regarding levels of affection and availability of people to look after their child. | E>P | |
| V. Socioenvironmental issues | 1. Limited use of current guidelines for making ethically appropriate decisions. | E>P |
| 2. Lack of consensus regarding use of medical resources. | E>P | |
| 3. Insufficient local resources. | P>E | |
| 4. Regional differences among resources. | P>E | |
| 5. Recognising the fact that severe neonatal asphyxia, which leads to severe mental retardation and disability, will not be diminished. | E>P |
Summary of quotes in the main five categories
| Main category | Subcategory | Interview/ | Quote |
| I | 2 | 2/q28* | ‘It’s our role to save the child’s life, no matter what others may say. I cannot easily give up on their chance to live.’ |
| 5 | 14/q151–q154 | ‘Doctors have to be right. I have to be right. I always make efforts to justify my action medically, scientifically, mentally, and emotionally.’ | |
| 12 | 13/q291 | ‘I always feel uneasy when I think I may have forced my own sense of values too hard on the child’s parents.’ | |
| 16 | 11/q251 | ‘We have no experience of choosing extubation, and we don’t know how we can rationalize that option. There is a need for structuralized education.’ | |
| II | 3 | 5/q196 | ‘I don’t have a clear answer to the question of whether children with spinal muscular atrophy type 1 are unhappy or suffering: since birth, they have been unable to move by themselves.’ |
| III | 6 | 3/q17 | ‘Even after we’ve already decided to withhold treatment, I’ve given antibiotics via an intravenous drip to treat a patient’s pneumonia. I knew it would not bring her back, but I was reluctant not to apply a non-invasive, medically appropriate, available therapy.’ |
| 8 | 9/q99 | ‘Even if it might not turn out how we expected, it is better to do what is medically appropriate and feasible. That is particularly true when you can’t tell what the best is for the child at the time of the decision.’ | |
| IV | 2 | 5/q58 | ‘After we provided parents with objective data showing the severity of their child’s condition, they didn’t accept our viewpoint. Instead, they just hoped for a miracle. It was difficult to discuss with the parents what we could offer as alternative options.’ |
| 3 | 9/q54 | ‘It depends on the family’s personal capacity or intention to take their child home or not.’ | |
| V | 1 | 8/q59 | ‘It was a serious matter to me that plans for life-sustaining therapies differed among doctors. I think it happened because we had no practical guidelines to follow at that time.’ |
| 3 | 10/q75 | ‘The public support system for sick children in Japan is inadequate. It may differ according to where people live, although it may also depend on the condition of the patients. Some families fall apart soon after they decide to take care of a severely disabled child at home. So it’s not always good to think that people should live together just because they’re a family.’ |
*2/q28 represents the quote (q) number 28 in interview 2.
Figure 1The five elements and three domains of paediatricians’ dilemmas. The black circles indicate the five major categories (I–V) of paediatrician’s dilemmas. The arrows correspond to categories VI–X and show the conflicts among the relationships of the five major categories. Decider, process and consequence (grey ellipses) are the three domains of the five categories.
Representative dilemmas harbouring the interaction between different categories
| Category | Subcategory | Interview/ quote no. | Quote |
| VII. Paediatricians’ convictions (I) versus confronting parents and families (IV) | 2. Consideration for parents’ suffering | 8/q7 | “I began considering bronchial intubation, though I was reluctant to do that. I didn’t want to force the child’s mother to follow my opinion, and I understood the mother’s unspoken, desperate wish. My judgment wavered momentarily.” |
| IX. Paediatricians’ convictions (I) versus socioenvironmental issues (V) | 8. Difficulty in developing consensus among the medical team | 4/q118 | “I firmly believed that my plan would benefit the child. But it was very hard to find agreement among the other doctors. The argument became complex without a substantial conclusion, and the child was left out of the picture.” |