In talking about it, I had only tried to explain that I understood that it was probably a necessary conversation to have with many, if not most, ARDS patients, but I thought that it should be done with the most compassion possible.

I was talking with some others and I thought that I would open up the conversation on the message board, try to get input from others. I think it is an important topic, since the perceptions vary widely.

I hope that others will participate although I realize that this may be an uncomfortable topic for some. Again, nothing scientific...just thoughts and impressions about what you and your family members experienced. Thanks, Eileen

PS I should add that my family had one such meeting...somewhere between the ten day and two week period on time after my diagnosis. It was the first time they were able to assemble all the pertinent parties involved in my care, hospital staff, etc., and they told them sadly that I was not expected to survive and that if I did, it was unlikely I would ever get off the vent. They said it was a quality of life issue and that they should consider removal from life support and that time. It was at this meeting that they first mentioned the possibility of brain damage as well.

We had one doctor, a consulting physician from another hospital, who felt that they were writing me off too soon.

Today, over two years later, it all seems like yesterday. My mom is doing very well. Litterally nothing the doctors said would happen did. No wheelchair, no oxygen, no brain damage, no diminished quality of life. Her initial ten percent chance of survival appears to have been enough of a chance to get her through her battle.

To be very honest, I am not sure if I would be in the position I am today if my mom had lost her battle with ARDS. As much as I thought I had prepared myself, I really do not know how I would have handled it if she had died. So many times I left her room thinking it would be my last time to touch her hand or to say goodbye. People ask me often about the "family meetings" and what to do. I always tell them not to make decisions based "solely" upon the doctors suggestions, make decisions based upon your heart and make sure your decision is one that you can live with.

While doctors are indeed smart, there are things they cannot factor in to those survival odds, it's called a Miracle. And so far, every ARDS survivor I have known, has been called "A Miracle" by the same doctor who gave the speech at those family meetings.

Also, on a different twist, I have two children who were 9 & 13 at the time of my ARDS crisis. Our doctor consulted with a children's psycotherapist who helped her prepare to "talk" to our children. After I came home I asked the children to tell me what the doctor had told them. They said she explained that my lungs & heart were sick. They were doing everything they could to help me and I was sleeping so I could try to get stronger. She said she knew I wanted to come home to them, and if there was any way I could, I surely would. But, there was a chance that I might have to go to heaven if my body could not get better here on earth. She cried with them and she prayed with them. She gave them as much medical information as was appropriate, explaining the machines, and the ventilator so they would not be as frightened when they saw me.

I don't believe we had the dreaded family meeting while our daughter had ARDS.
She was vented for 17 days, and only during the last 10 days were the doctor's calling the problem ARDS.

The ICU of our Children's Hospital in Canada
encourages parents to stay as long as they wish, and in our case, it meant that she had at least one of us there 24/7. Each day the doctor's and residents started with rounds at bedside, and parents were encouraged to
participate, and questions were welcomed.

My husband and I recognized that she was improving, when she was no longer
the first case of the day!

Linda

When my mom was in re-hab I was at the hospital for a visit and I ran into her ICU doctor. He was with another doctor in the elevator and when he saw me, asked how my mom was doing. I told him how far she had progressed since he had seen her last, about 4 weeks prior to that moment. He turned to his fellow doctor and said, "This woman's mother is the reason that you NEVER EVER give up on an ARDS patient."

My mother wasn't expected to survive either but she did, like many others. She also has very few post-ARDS effects and she has a very good quality of life. She is not oxygen-dependent.

I told my parents not to get upset, that he has come through 7 weeks with no other complications and lets take this day by day...

Determinants of Ventilator Withdrawal in Critically Ill Patients Have Changed
http://www.medscape.com/viewarticle/461716?mpid=18802

By Anthony J. Brown, MD

NEW YORK (Reuters Health) Sept 18 - In the past, the decision to stop mechanical ventilation in a critically ill patient was primarily based on objective data, such as illness severity and organ dysfunction. New study findings suggest that this has changed and that physicians now base the decision on what they believe the patient wants and on their likely outcome.

"Studies from a couple of decades ago have suggested that patient age and organ dysfunction were major factors influencing withdrawal of life support," lead author Dr. Deborah Cook, from McMaster University in Hamilton, Canada, told Reuters Health. Also, such support typically "wasn't withdrawn until after many weeks in the ICU."

In the new study, which was published in the September 18th issue of The New England Journal of Medicine (NEJM), "we wanted to see whether or not things had changed since these studies were reported," Dr. Cook noted.

Instead of increased age and illness severity, "we found that more patient-centered factors were the main determinants of ventilator withdrawal," Dr. Cook stated. Specifically, "if the physician believed the patient didn't want life support or if they thought their chance of survival in the ICU was less than 10% then withdrawal was more likely,"

Other predictors of ventilator withdrawal included the physician's perception that future cognitive function would be severely impaired and the use of vasopressors or inotropes.

The findings are based on a study of 851 critically ill patients who were receiving mechanical ventilation in ICUs in Canada, the US, Sweden, or Australia.

Of the various determinants identified, the physician's perception of the patient's desire for life support was the strongest. When the physician believed that the patient wanted no life support, ventilator withdrawal was 4.2 times more likely.

In contrast with the older studies, patients typically spent just a few days on mechanical ventilation, the findings show.

The new findings may indicate that physicians are communicating better with critically ill patients, Dr. Cook observed. Physicians seem to be "paying more attention to conversations with the patient and their family rather than looking at some scoring system that tallies up injury severity," she added.