ISSUES AND DISCUSSION Advice from one of our advisors Philip Chard On Tuesday, February 16, 1999, Co-Founder Sue Peterson met with Philip Chard, MS/CICSW/CEAP, in Brookfield, WI. Philip has extensive experience in working with the terminally ill including hospice programs. He also has taught behavioral sciences at Michigan State University's College of Human Medicine for over 7 years. The purpose of the meeting was to better understand the needs of ARDS survivors, the families in ARDS crisis, and the families of those who have lost loved ones due to ARDS. We discussed several different areas. 1.       People who lose loved ones to a relatively unknown illness such as ARDS often have more difficulty coping than those who lose a loved one to cancer, heart disease or some other more widely recognized medical problem. In some sense, it is easier to accept that someone has been stricken by a "common disease." As in other deaths, the rituals that help us release our grief are important. This is the function of funerals. After the ritual of the funeral, it is important to speak about the loved one with close family or trusted friends. It is good to share your feelings and your memories openly to the extent you are comfortable.       Expression of feelings (and not holding them in) are important during the grieving process. It is equally important for children to take part in rituals of "letting go." Families make individual choices about what they tell their children and when. Some children are included in the ritual of the funeral. For those who are not, it is important to observe some other kind of ritual. Children need an outlet to "let go" also.      Philip Chard recommends that the families design a ritual for the children or have them participate in creating their own. He suggests that the children choose some object that has special meaning to them and is associated with the memory of the loved one who has passed on. This could be a toy, a card, a letter or anything that has special meaning. The ritual could involve the burial of one or more of the items (perhaps next to the final resting place) or even burning of an item. This ritual signals transformation-that the heart is able to "let go". This may seem to make things worse for a while but the "letting go" process has begun and it will help. It is important to talk to children often about the loved one and to encourage them to express their feelings. Children often internalize their feelings and blame themselves for what has happened. 2.       We have learned from others who survive ARDS that on some level they usually are "aware" of external stimuli while they are in a drug-induced coma. This frequently manifests itself in "dreams" while in a comatose state. There is some research that is being conducted in this area. The medical community is also aware that even when a patient is under anesthesia and while surgery is actually being performed that the comments of people in the operating room are sometimes "heard."         It is important that families provide their loved ones with external stimuli such as talking to the patient, touching, playing classical music (there is evidence that playing classical music for young children helps future cognitive abilities such as in Math, so why not in people who are in a coma?) and the most important sense is smell. Bring in things that you know are favorite smells of your loved ones, such as a fragrance, a favorite food (hot apple pie), a piece of laundry that has been dried in the sun; anything that will stimulate the sense of smell. It is important to do everything you can to "re-connect" with your loved one.         As for the vivid dreams often reported by ARDS patients, there is such a thing called "day residue" in which the sleeping or comatose mind takes the sensory input from the day or from the immediate environment and uses this in the "dream" state. When the senses are deprived of any outside stimulus, the mind "disconnects" and this is when the sub-conscious (dreams) become devoid of reality.         Just as the positive words that you speak to a comatose patient will be understood (on some level) so will the negative ones. Don't speak of your concerns or fears while you are in the patient's room. Keep all conversation positive and hopeful. If the medical professionals are relating their medical opinions in the patient's room and their words are not positive, ask the medical personnel to discuss this in a different area. This can be hard to do as we are looking at these people to make our loved ones better and we are afraid to offend them in any way. If this is difficult for you to do, enlist the aid of a nurse or other medical staff member. Tell her or him that you are concerned about any serious conversations taking place in the presence of the patient. They will help make your wishes known to other medical staff and you can arrange to discuss the diagnosis and prognosis in another private area.         Keep a journal of the days events for your loved one. This is valuable for them to refer to when they are out of ARDS crisis. There is a need to know what happened and when. Survivors who have this type of information are relieved with the knowledge of what happened to them. Appoint one person in the family to receive medical information from the doctors. This will relieve the pressure on the medical staff to relate information to many. One person will be getting the information instead of many and the communication will be stronger and clearer.        Schedule times for the family to be with the patient if at all possible. This will ensure that all are getting adequate rest and eating properly. Each family member can contribute to the journal and when one family member is relieved the next will have an updated version of the events of that particular period of time. 3.       When it appears that a family member does not want to get close or involved during the ARDS crisis, it does not mean that they do not care. We all react differently to crisis. There are some people who withdraw. This is a form of self-protection, not indifference. This is a normal occurrence and should not be reason for shame. Everybody reacts in their own way. The person who seems to withdraw needs reassurance that they are normal. This may be something that they need do to protect themselves. There is a fear that if they allow themselves to get "too" involved that they will lose their control or be emotionally wounded. Don't make the mistake that this "withdrawal" shows a lack of interest or care. Quite the opposite is probably true. 4.       What do ARDS survivors go through? The crisis is past. The rehab has begun. Now the survivor must get used to a new "normal" not only physically but psychologically. Surviving ARDS, as well as other illnesses that are not well known, is unique. The survivor goes through many feelings. The survivor feels guilt. Why? If a person is diagnosed with cancer or heart problems, it is easier to understand what this is about. We have read about it. We may even be able to say to ourselves "if I hadn't smoked...if I had watched my diet...if I had gone for regular medical checkups..." The ARDS survivor doesn't have any of these things to reflect on. The causes for developing ARDS are still little understood. This "guilt" or "existential paranoia" is the result of not knowing what they could have done to prevent this from happening.         There is fear that if this happened once it might happen again. There is anger because we don't know what happened or why. There is a sense of "free floating anxiety" and an inability to trust one's body. There may be short term memory loss. This is normal and in most cases improves greatly. The survivor begins to adapt to new things and to a new normal. This becomes a goal. Some fears and insecurities may never completely go away. It is important to speak to family members about what they are feeling. Psychological help may be needed.         In some ARDS studies there has been reference to ARDS survivors experiencing symptoms often found in those suffering from Post Traumatic Stress Disorder (PTSD). It is important to remember that PTSD is not "just all in your head." PTSD involves specific changes in the chemistry of the brain that trigger anxiety, panic-like feelings, and even mental "flashbacks" to episodes of one's illness. PTSD cannot be just willed away by mental effort. Its treatment often requires professional assistance from a psychologist or psychiatrist. 5.       What do families of ARDS survivors go through? Our loved one has survived. This gives us tremendous joy and happiness. We think all will soon be back to normal and we will be able to put this behind us. Wait a minute. These are our feelings. Families must keep in mind that the ARDS survivor has gone through a great deal. There are a lot of issues to be worked out in order to help the survivor recover as well as possible. Keep the lines of communication open. Find out how they are feeling inside. Let them express their fears to you. Sometimes it is not so easy to just forget and go forward. Perhaps the family could benefit from joint counseling so that the survivor and the family members understand what each has gone through because of ARDS. There is a gap that exists between the patient and the family. Each have had uniquely different experiences. We must work hard to close this gap. We must share our feelings and proceed together. 6.       Should the survivor obtain and read their medical records? Some medical professionals are for this-others will discourage this. The most important thing is HONESTY. Answer the questions that survivors have as completely as possibly. This will prevent a sense of isolation. ARDS survivors do not need to feel any more of a victim than they already do. They need every kernel of information that you can give hem. This will add to their sense of control and to the necessary emotional healing. What people are not told, they make up . . . and usually what they make up is inaccurate. 7.       Depression. This is common in one recovering from a life threatening illness. By talking and communicating we can help the patient through this. If the depression lingers it may be a good idea for the ARDS survivor to be evaluated by a psychologist for depression. It may take a little time to find a psychologist that you feel comfortable with. Depression unchecked can result in a lowering of the immune response and lead to self-destructive behavior.