Expert: Margot RN BScN CGN - 10/2/2006

Question
My 84-year old father recently passed away.  He had dementia but his little body just wore out, slowed down and stopped.  During the last few minutes he developed Cheyne Stokes (I believe that is the correct term) breathing, and three times during this process, he raised up (he was elevated in his hospital bed, but raised his head and shoulders), grimmaced for a second or two, then lay back down.  The hospice nurse said his heart was beginning to fail and that it was not painful - but he grimmaced - so it's hard for me to believe he didn't have a moment of pain those 3 times.  Maybe she was trying to comfort me.  Can you give me an honest answer - was he in pain?  I just need to know the truth.  Thank you so much.

Answer
Hi Janet and thanks for writing,

As our body shuts down the chemicals in our system get out of whack and this causes disorientation and progressive sleeping - I do not believe people are "aware" at this point of what's going on, and I honestly believe they're simply in a sleep-like state.

I know it can look like the body is struggling, especially if you witness Cheyne Stokes, but I do not believe the patient feels stressed as they are usually coma-like at this point. I have held many people's hands as they pass on, and when they do wake, I do not see stress or panic, I usually see peace in their eyes, even if their physical body appears to be struggling.

Honestly I believe what you saw was the physical body and muscles reacting as the oxygen level dropped, but I do not believe your Father would have been aware or felt any pain of distress.

I hope this helps,

Margot