I was involved last week at a meeting of all the Patient and Family Councils at Hopkins in a fascinating conversation about the subtle and not always understood messages that patients and medical staff exchange about the future. What, one asked, does it mean when a seriously (read terminally) ill patient says, begs really, “Please do not give up on me?”
Obviously, it depends on context, but I suspect that physicians may well hear this as “Do not stop trying to cure me,” when in fact it may mean a wide variety of things, of which these are just a few:
- “Keep me alive as long as you can”
- “Keep me out of pain as much as you can”
- “Keeping caring about me”
- “Keep caring for me”
- “Stay in touch with me”
- “Do whatever you can to help me, you know best what it is”
But actually, I think, from my own perspective, I would mean really, although not in the physical presence sense, “Do not leave me alone — stay with me.”
In the end of course, the only thing to do is to ask the patient what they mean, what they are afraid of, and what they want the caregiver to do, or try to do.
And, whatever the patient says, what makes sense is to try to be both realistic, but hopeful, not in the sense of denying reality, but in the sense of trying to find something that can give hope — something to look forward to — even if it is only for the the next minutes, hours, days or weeks, and even if “all it is” is peacefulness and continued human connection. I hope, when the time comes, that will be enough for me.
I have every peaceful confidence that all those who take care of me, both family and medical staff, will provide it.