This weekend my family and I attended the kickoff picnic for another year of Va LEND mentorship. Va LEND is a program of study at our local university in which professionals team with families that have children with special needs. It is a year long program that affords the trainees the opportunity to see really in-depth what life is like on a daily basis when one is raising a child with special needs.
We’ve been participating as a mentor family for 10 years, and have had a pediatrician, an occupational therapist, several teachers, and a physical therapist, just to name a few, as our trainees. I think it is really a wonderful opportunity for the trainees to see the bigger picture and for the families to understand the stresses and viewpoints of the professionals. But all this got me to thinking….
When Ronnie recently went through his bladder surgery, the doctors told me a lot about the surgery itself, but they didn’t tell me what life was going to be like for the six weeks following surgery when Ronnie was recuperating at home. The doctors didn’t intentionally leave out that information – they just didn’t know it. Their perspective is clinical. My perspective included sleeping, eating, bathing, bandaging, going to appointments, and dealing with catheters that failed hourly.
I believe that if I had a glimpse into what life was going to be like post-surgery, my stress level and Ronnie’s would have been lower. I could have made arrangements for the things I would need before the surgery, not after. I could have worked out a nursing schedule that made everyone more comfortable. I could have stocked up on easy-to-prepare meals, and done as many errands as possible.
Even while Ronnie was in the hospital, I wished someone had told me what to expect – not the surgery details – the doctors did a great job of that. But things like packing pajamas for Ronnie was a waste of time because he wouldn’t be able to put them on due to all the catheters. Or, preparing myself and Ronnie for the fact that he wouldn’t be able to eat for a long while after the surgery. Or, making sure I had an easy way to get him home when he was discharged. Even knowing that I could get a week long parking pass from the hospital at a reduced rate.
So, I think the doctors need a mentor family for their patients that will be going through similar surgery.
If another family was facing bladder augmentation surgery, the doctor could refer that family to me. I could help them understand the daily challenges, the emotional toll, and the needs to expect once they returned home. I could even be at the hospital holding their hand if they liked.
Doctors are often not as warm, not as comforting as another parent can be. The doctors do their jobs very well, but don’t have the time or perspective to go that next step of providing the day-to-day support a family needs.
It’s time, in my opinion, to treat the family, not just the patient. What do you think?
4 comments:
As a physical therapist, I agree wholeheartedly. The perspective of another patient who has been through the same procedure, can be invaluable. I would suggest that you call the surgeon's office and let them know you would be willing to talk to other families. And don't be afraid to ask if there's a former patient who would be willing to talk to you if you ever have another procedure that you're unsure of. Good luck!
That's the kind of doctor I'd want to be. One that understands both sides, and could help with the personal stuff instead of just the medical stuff.
Great insight; I wholeheartedly agree!!
--Mia :D
As a mom of several children with special medical needs I agree with you...the family as well as the patient should be 'treated' by the medical community. Isn't that what is meant by Family Centered Care?
The really frightening and sad reality that I am learning as my children become legally adults is that the medical world for adults is much less caring, sensitive, understanding, open, warm etc than the pediatric world we have grown so use to. I beleive if there was an attempt and or commitment to recognize & treat adult patients of all ages and their families as a team all involved would benefit greatly during a very stressful time.
with Hope,
~ Chris A ~
I absolutely agree with you! well written, well said :)
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