Last night I finally read the book. So many experierences by other parents resonate--some in articulating the bittersweet joys and expressions of love, and others almost eerily reminding me of the most challenging moments. Here are some of the questions that come to mind as I reflect on what I've read and prepare for the virtual book tour:
Questions for anyone:
1. This book collectively offers many insights and suggestions for parents coping with the devastating news of an anticipated infant loss. If you could offer only one piece of advice for a parent who has just learned the fatal diagnosis of their child, what critical guidance would you first offer to parents? What critical guidance would you offer to their physicians/nurses/etc...? And, what essential guidance would you extend to friends and family of that family?
2. If you yourself are a bereaved parent, how have you continued to celebrate the memory of your deceased infant, and what resources did you utilize to help you cope with your loss?
For the authors:
1. How did you connect with one another in conceptualizing the need for this resource guide, and do you know of any OB/neonatology/perinatology programs likely to infuse the guiding principles outlined throughout this book in the training?
2. Throughout A Gift of Time, beautiful tributes to physicians and other care providers who supported families' decisions to continue pregnancies to term, while knowing the unborn child wouldn't survive long after birth, are shared. However, this book also details personal testimonies of parents who encounter narrow-sighted and even dismissive and demeaning perspectives from physicians; particularly disturbing to me, personally, are the accounts of dissonancy in medical practice, in which parents are pressured to immediately terminate the pregnancy [because from a utilitarian perspective, the unborn baby's life will offer no 'value']--and yet those same parents are eventually chastened by those very same physicians for later declining aggressive medical interventions and instead limiting measures to compassionate care after the child is born. (E.g., Amy's story on p. 145 and Kathleen's story on p. 160.)
Can you speak to the extent that physicians-in-training generally receive guidance in making well-formulated ethical decisions in complicated medical quandaries? Any insights, in addition to those shared in the book, as to why this field of medical ethics seems to be so heavily utilitarian in perspective? Are there any training models you've seen which you think are outstanding?
Anyone is welcome to post their thoughts on this blog!
Hi Jennifer
ReplyDeleteI'm not one of the authors of this book but just finished reading it today. It's almost exactly 18 yrs since we found out, half-way through the pregnancy, that our daughter was unlikely to survive. She survived to term, and then lived for 5hrs. Her name was Jennifer Grace and so as I read the book, which was very difficult, and began missing out some of the quotations because my eyes just swam with tears, I kept reading yours because of your name and because so much of what you said echoed our thoughts. Thankyou for all you wrote.
It's late at night here so I'll just answer a little of your first question just now.
My one piece of advice to parents just being given the diagnosis is "give yourself time - a few days or more - you don't have to make a decision about what to do straight away". Our obstetrician sent us home for 3 days, which was a real gift. So many people are rushed and pushed, and aren't given time to come to their own decision. And my advice to the doctors/nurses is the very same - don't rush/push just because you think termination of pregnancy will be best - give the parent(s) time to make their own decision.
Thankyou! - I'll add more soon.