KendricksDad, from one bereaved dad to another, I trust your intuition and wonder what specific guidance you received or could have received that might have lessened those two painful memories?
Was the option discussed to sedate Kendrick so that he was sleepy? I realized when reading your story that I never put too much in the fact that when my Sasha died at age 2 in our bed that her eyes were closed as she was in a deep natural sleep. Or might it be a case where sedation is more for the parent’s benefit than the child?
Did anyone mention that your child may stop breathing and then restart? This is what my child did and we were prepared by our SickKids palliative doctor. It also allowed me to hold Sasha one last time. My wife held her after she died. Your thought that “he was giving my wife a chance to hold him as well while he died, which she did” is a healing story to cherish; Kendricks final sense memory was not the pull of the tube but of his mother’s loving warmth.
Staff experience of death IS variable, particularly with end of life care, and some health care professionals are still uncomfortable offering specific guidance, maybe out of some sense of respecting the sanctity of our bond. But the result can be to let parents figure something out that they have no experience in and about which little has been written. If we feel there are things we ought to know it helps these doctors help other families.
Please consider reaching out to the palliative team for a meeting when you go in again. You could even request the attending physician join. It helped me immensely to ask questions directly of staff and learn from each other.
Many hospitals have opportunities for parents to tell their story as part of staff education. There is also a detailed questionnaire written up at http://www.tourangeauresearch.com/student-research/kimberley-widger-rn-mn-chpcnc-phdc/ which you can ask the team about and if they do not have it then the primary investigator, Kim Widger, can help.
Thanks for sharing your memories of Kendrick’s last moments and your concerns and I look forward to your thoughts. You gave Kendrick the greatest gift, your presence and love through the good and the painful times from first to last breaths, and your questions honor his life and death.
Regards,
Jonathan