Guidelines for ethics discussions on Preemie-L

Guidelines for ethics discussions
on Preemie-L

Preemie-L was created as a support group for families and caregivers of premature babies and this continues to be our primary purpose as listowners. We would like Preemie-L to be a place where the ethical issues of prematurity can be discussed, while maintaining respect for the differences of belief and experience within our community.

These guidelines have been developed in response to some of the problems we've had in past discussions. If you have any comments on the guidelines, please email the listowner.

Preemie-L has many members who have had premature babies born at the cusp of viability. For some parents, the decision has been made to pursue all measures, others have decided to let their children pass on either at birth or later during the NICU stay. For every one of these people, their decision has been made carefully, considering all alternatives presented and within the framework of their own legal, moral and family standards.

One of the most distressing things about having a premature baby is the loss of control and feelings of helplessness. It is natural for families to resist anyone, including other parents, who advocates views that threaten parents' rights to make decisions about their own child, whether it is to save an extremely premature baby (no matter what the predicted outcome) or to withdraw life support.

At any time, our community will have members who are struggling just to get through the day in the intensely stressful reality of a NICU. We must be respectful of those who are in real crisis and who are weeks, months, perhaps even years away from regaining emotional equilibrium.

Listmembers participating in an ethics discussion should consider what benefit and impact their messages might have on the Preemie-L community as a whole and on individual members of our community. It is a responsibility of membership to Preemie-L that the exchange of ideas, support and general sense of community be given priority over your personal opinion.

It is unacceptable to challenge ethical decisions made by other Preemie-L members, either through direct postings, personal comments, inference or implied criticism. We ask that any posting dealing with the issues of viability, resuscitation or quality of life be phrased in a way that explores your own situation rather than the situation of other listmembers. Look at ways that could have improved your own experience, and ways that could help other families in the future.

* Take care in what you write. Email always sounds harsher than speech because there are no accompanying gestures or facial expressions.

* Take the time to ask yourself, "How would I, or someone I know who is like this person, feel receiving this email?" "Would I say this to someone I knew personally or would I say this in person or on the phone?"

* Remember that what you say may as well be stated on a microphone in front of a room of 480+ people. Imagine yourself getting feedback about your opinions in this situation and how easy it can be to feel attacked.

* Try not to give offence or be easily offended yourself. When you make your points respond to the issues not to the personal attributes. This is best done by using "I" language in preference to "You", for example "I feel", "I think", "It seems to me" and so on. Avoid accusatory statements, labelling and sarcasm.

* In ethics discussions, it is wise to delay sending your mail, say overnight, rather than posting it immediately after writing. This will give you the opportunity to edit your message later and think again about how your post might affect others on the list.

* Listmembers participating in an ethics discussion should consider what benefit and impact their messages might have on the Preemie-L community as a whole and on individual members of our community. It is a responsibility of membership to Preemie-L that the exchange of ideas, support and general sense of community be given priority over your personal opinion.

* In a community the size of Preemie-L, people will have strongly felt, sometimes opposing beliefs. Other parents on Preemie-L are likely to feel the same level of passion, commitment and dedication to premature children and their families as you do yourself. Don't try to convert people to your own beliefs through force of argument.

* Never speculate publicly on someone else's motivation in making decisions about continuing or withdrawing life support. But feel free to describe the ways in which you feel that information and support being given to parents could be made more helpful. This applies to doctors, other medical professionals and other parents.

* Try to be as accurate as possible when stating things about the group, avoiding statements like "Everyone agrees with me", "Most people don't like to hear a different opinion on this list", "Most people are too afraid to say what they think" and so on. Without polling the whole membership, no one knows that this is true.

* Personal disagreements must be moved to private email and off of the list. This should happen sooner rather than later, even if the intial disagreement happened in the public forum. If two people begin to write back and forth to one another on the list, it is time to move the discussion to private email.