Sandy Clancy, PhD
Bereaved parent and Program Manager and Patient Advocate, Palliative Care Service and Coordinated Care Clinic, Massachusetts General Hospital for Children.
1 / 21
The hospital is like a foreign land
It’s hard to know which doctor is in charge.
Parents get exhausted by the steady stream of specialists in the room.
It’s exhausting to sort out all the different perspectives from specialists. Parents can ASK FOR HELP.
Getting Clarity—Parents can say, “This is what I’m worried about. Should I be?”
Hospital teams don’t want families to be confused.
If a parent feels angry or upset, ask for help.
All the people who helped me when we were in the hospital with Jack.
There will be communication challenges. If you’re wondering, just Ask.
Providers can behave differently on different days. But they always care.
The Flow of the Day: Caregivers Change Shifts
Self-Care: Providers will encourage parents to get sleep and get some air.
Self Care: Finding help in the hospital
Parents feel pressure to be “liked” by their child’s medical team, but need to feel comfortable expressing their concerns.
For Providers—Self care is important for providers too!
For Providers—Ask families about their life OUTSIDE of the hospital, to better understand their big picture.
For Providers—Families can be quite different depending on when you see them.
For Providers—Acknowledging feelings of failure. Encouragement to honor the care you and others have provided.
Should the Providers go to the Funeral?
For Providers—Child death impacts us and takes a toll.