“It scares me to know that we might not have been there!”: a qualitative study into the experiences of parents of seriously ill children participating in ethical case discussions

BMC Medical Ethics

Trude Linja²  Reidun Førde¹ 

[1] Centre for Medical Ethics, Institute of Health and Society, University of Oslo, Oslo NO-0318, Blindern, Norway;Medical Clinic, Oslo University Hospital, Oslo, Norway

关键词: Discussion;    Parents;    End-of-life;    Committee;    Ethics consultation;   

Others  :  1212272
DOI  :  10.1186/s12910-015-0028-6

 received in 2014-10-01, accepted in 2015-05-07,  发布年份 2015

【 摘 要 】

Background

All hospital trusts in Norway have clinical ethics committees (CEC). Some of them invite next of kin/patients to be present during the discussion of their case. This study looks closer at how parents of seriously ill children have experienced being involved in CEC discussions.

Methods

Ten next of kin of six seriously ill children were interviewed. Their cases were discussed in two CECs between April of 2011 and March of 2014. The main ethical dilemma was limitation of life-prolonging treatment. Health care personnel who could elucidate the case were also present in the discussion. The interviewer observed each discussion and then interviewed the next of kin shortly after the meeting, following a structured interview guide.

Results

All next of kin emphasized that it had been important for them to be present. They stressed the important role of the CEC chair and appreciated that their case was discussed in a systematic way. Some next of kin appreciated that the child’s impending death was discussed openly, and believed that this would facilitate their future grieving. Having had an opportunity to hear all the arguments behind the decision to be made would probably help them to accept the road ahead.

All of them felt that they were taken seriously and listened to. They felt that they had added vital information to the discussion. All but one couple did not want any decision-making responsibility, some of them even worried that they might have influenced the discussion too much.

Conclusions

None of the next of kin felt that being present during the CEC discussion had been too heavy a burden. On the contrary, they claimed that their presence in a CEC discussion may add vital information to the discussion and may improve the quality of the decision. It is important that the CEC’s role is explained to them so they are well prepared for what to expect. They need to be followed up after the discussion.

【 授权许可】

   
2015 Førde and Linja.

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