What are the most important questions that I should ask the
Forewarned is forearmed as the old saying goes. At the same
time, too much too soon can be significantly overwhelming. In this section, we
provide general responses from some of our medical and professional advisors as a guide to
assist you in navigating the rough waters of battling ARDS.
1.) Which body systems are/will be
affected? Do any other organs demonstrate abnormal function?
The reason for this is that ARDS in most cases is really a systemic
injury involving multiple organs. The lungs are among the most sensitive to the
inflammation from ARDS, and hence they may be the first or the most prominent organ
involved. Loss of pulmonary funtion, the inability to adequately oxygenate the blood
and remove CO2, however, may result in the involvement of other (organs).
If involvement of other orgams is substantial, then the prognosis is not as good, and
therapy will be more involved.
2.) What mode of mechanical
ventilation is being used, and what pressure control and volume-cycle are being used for
To some medical professionals, from a medical standpoint it would be
desirable to hear terms such as 'pressure-controlled ventilation', 'inverse ratio
ventilation', or 'permissive 'hypercapnia'. However, those terms are not
self-defining and medical personnel need to explain them to patients and their families in
more simple layman terms, and be able to show why a recommended course is better than some
other available course. Patients and their families, quite naturally, want the best
and fastest course to get well. With ARDS, there is no "best and fastest". This
needs to be stressed. Importantly, also just knowing some buzz words does no one any
good. Medical personnel should be up-to-date on current research and the body of
medical knowledge available to them to determine the best way to address the particular
patient's ARDS, including being prepared to transfer the patient to a medical facility
experienced in dealing with ARDS if this is medically appropriate considering the
patient's condition. There is a growing evidence that less traditional modes of
ventilator support may be associated with less additional lung injury and improved lung
physiology during mechanical ventilation. There is also a consensus that limiting
inflation pressures should be a goal, and that volume-cycle is very important as well in
ventilator support. The leading European and US centers treating ARDS generally
agree on these principles. In fact, limiting ventilator pressure has been shown to
be an important factor in limiting lung damage from ARDS.
3.) Does the health care team have
experience in taking care of patients with severe ARDS? Do you know about recent
research and at what point would you transfer to a different facility with an ICU having a
medical staff experienced in handling ARDS patients and multidisciplinary approach to the
There is some evidence that outcome may be better in ICU's who have
experience in treating ARDS. This appears not only from the physician standpoint,
but also from that of nursing, respiratory therapy, nutritional support, etc. Since
ARDS is a multisystem condition, an experienced multidisciplinary team approach is highly
desirable. If the answer is "no" consider early transfer to a facility
that has experience with managing ARDS. Importantly, if transfer is not possible or
undesired, you should make the physicians aware of the wide range of resources such as the
ARDS Clinical Network (ARDSNet) which they may use for consultation and information
gathering, including this website.
4.) What are the current chances for
"survival". How often do people return to their previous lifestyle, and if
limited, to what extent?
This is difficult for any of our medical consultants to expand upon
as each patient is unique and the circumstances leading up to the ARDS and its course may
vary greatly. It is important to recognize that some people, for emotional and
psychological reasons, do not want to know the current chances of survival. Mark
Lowery, our webmaster and survivor of ARDS, recalls how his mother told him that during
his battle with ARDS she did not want to know and was glad that the doctors did not tell
her the usual mortality rate. She told him that the doctors stressed the seriousness
of his condition and she was able to understand and deal with that in making decisions
with the doctors of what medical care to provide to him, but she would not have been able
to deal with the knowledge of the usual mortality rate.
The second aspect is very difficult to answer. Some people
recovery quickly and very well, returning to their pre-ARDS normal lifestyle. Other
survivors have varying level of disabilities and continuing problems associated with the
ARDS encounter. There may be physical as well as emotional and mental health issues
which survivors, their families, and loved ones will encounter and have to deal with on a
day to day basis. In this vein, ARDS is no different that any other serious medical
condition. The true strength-sapping power of ARDS is the quickness with which it
may strike, the rapid onset and progression of the medical condition to a very serious
level, and the unpredictability of its course.