Expert: Mary Gordon - 10/23/2011

Question
My mother was hospitalized with severe infection and in shock three weeks before she was taken off of the respirator.  They said she was suffering from sepsis.  They found a severe amount of pneumonia.  By 2 days that was pneumonia bilaterally.  The had placed her on a ice blanket to bring down her fever.  It was pretty painful to watch.  Her eyes would look at the tubes and needles.  They would dart back and force and look at us.  We wanted to save her.  After three weeks my father made the decision to take her off the respirator although the doctor said she could probably live for at least 5 more years on a respirator.  My mother's written request for no life support played a role in his decision.

I went to the hospital.  The staff had unhooked her and moved her to a room away from everyone.  Things still in a bag.  No food, no fluids and breathing on her own.  For six hours she breathed on her own.  Three hours before her death she began struggling to breath.  By the time of her death she was sweating profusely and breathing very hard.  The doctor I summoned said it was like running a marathon and she would eventually be too tired to go on.

This was so painful to watch.  She finally stopped breathing and eyes were open in a fixed stare.  This whole process was so horrible to me.  I often wondered if we did the right thing.  I want to know if she was suffering.  Is it usual to let a patient fight to breath?  Others I saw just went to sleep.  Was that hospital visit torture???

Answer
The hospital should have prepared you and supported you better through the dying process.

Here is a site from New Zealand that gives a very good description of what happens when a person is actively dying. Don't be put off by the Buddhist references - the descriptions are very good and accurate.
http://www.amitabhahospice.org/public/helpful_info/signs_of_dying.php
Here is more basic list
http://cvc3.coastline.edu/modelcvc3courses/elliswaller/lesson13.htm

You will see that that kind of breathing is entirely common when a person is dying from chronic illness. I don't think she was in pain or discomfort or even really aware of her body. It's just part of the physical self giving out. So much of who she was as a person was already gone - but sometimes the process is slow.   

In the final stages of her Alzheimer's, my mother in law took in less and less food and drink and finally stopped taking in liquids or nourishment entirely no many times a day we tried, or how carefully we coached her. We did not allow tubes and IVs.  This final spiral lasted about six weeks. Despite very compassionate care from the hospice staff, it was completely brutal on everyone who loved her because it was so slow and agonizing. She did not seem to be suffering at all and yes, her breathing got labored and ragged in the last day.

We actually prayed something like a pneumonia would save her those grinding last weeks, but it was not to be for her. If your mother had not passed from the infection, what was ahead for her might even have seemed worse. It certainly seemed so for us.

You and your family absolutely did the right thing. Would you want her living for 5 years, laid out like a corpse with a respirator breathing for her, with no quality of life. I think that would be most people's worst nightmare, not just for themselves, but for their family and friends. Just because we can keep a body alive doesn't mean we should. Your father made a brave and loving decision based on what was the most compassionate for his life partner, and aligned with her wishes. If you could have restored her to health and a good quality of life, you know you would have moved mountains but it was not to be. Her body was failing her. Death is a part of life - you can't save someone from their own end when it is their time - and the most loving thing was done - to stop, pause, and let her have some space and peace with her family before the end. Put yourself in her shoes. She would have no idea what all the fuss was about, all the poking and prodding and panic and running around of medical treatments and the hospital. All of that is only worth doing if the person can recover and have some meaningful life again, not if all you are doing is prolonging misery. She was ready to go.

I know it is very, very hard to let go, but consider that that is more about you and your readiness to accept the end, than what was the best for your mom. You loved her and you were not ready to lose your mom. It takes real maturity and courage to put our own fears aside and look clear eyed at a situation. What did she want for herself? What was the kindest?

She's free and at rest after such a long struggle. Think of her soul as a silver balloon that was held to her body by a strand of spider web - when the tether finally broke, she flew free.

I know this is very hard but I truly think with time you will be at peace with this. Your father sounds like a very loving man. It takes guts to do what he did, and wherever your mother is, she is grateful and knows how much you all loved her.

Mary