The chat will be about hope and hopelessness.

Dan will be joined by Leo McCluskey M.D. who is an associate Professor of Neurology at the University of Pennsylvania and Medical Director of the ALS Association Center at the Penn Comprehensive Neuroscience Center.

I received the following e-mail from Leo McCluskey MD,MBE He is an associate professor of neurology at the University of Pennsylvania and Medical Director of the ALS Association Center at the Penn Comprehensive Neuroscience Center at Pennsylvania Hospital.  Dr. McCluskey will be joining us for our chat on Tuesday at noon.

Dear Dan, 

I am interested in pursuing a research project in my ALS patients regarding the potential harm(s) of false hope. By that I particularly mean a physician or health care provider purposefully keeping the hope that the patient is not actually suffering from ALS but rather from a potentially treatable problem even when the physician knows that the person is indeed suffering from ALS. In this scenario the physician might even subject the patient to treatments (and potential harms) for one or more of the other “potentially treatable” even when the physician knows that the diagnosis of ALS correct. The ostensible reason is to “keep hope alive” or “I don’t want to destroy hope”.  It is in my estimation this is a particular form of paternalism. Has anyone that you know of looked into this at all?

Leo McCluskey

Dear Dr. McCluskey,

Most humans I know are uncomfortable with death and do whatever they can to avoid it, and doctors are no exception.  I have spoken with several who have told me they don't know how to deliver bad news it's too uncomfortable.  Others have told me ask nurses are social workers to be with them  that they can break the painful news and then leave.  And they use are the doctors that know they are uncomfortable.  There are many others who are uncomfortable and don't know it, and they are the ones who are most likely to make poor decisions.  Of course that is not all doctors and many today are being trained in talking to patients about emotional issues.

But my first reaction to your e-mail was that this denial actually deprives their patients of something precious.  30 years ago when I first became a quadriplegic, I've was fortunate in that no one gave me hope that I would ever walk again.  But that wasn't true for some of my fellow patients who were told about promising new research and to "never give up hope".  They went home and postponed their lives waiting for the cure.  Certainly in the short run hopelessness can be anguish.  But as a Native American saying goes: "in hopelessness, we become open channels."

I have treated many patients with terminal illnesses.  Understandably their first reaction is to try to clutch on to life seeking whatever hope they can find.  But after a while, the battle shifts from preserving life to postponing death.  And then something else happens.  Almost everyone I've seen once they stop fighting, looks more peaceful as though they have crossed some kind of psychological or spiritual threshold.  Many of my patients have begun to reflect back on their lives with gratitude and love.  And this only happens when they give up their battle and rest in the lives they have.

I don't want to sound like a Pollyanna and this pattern is certainly not true for everyone.  As my father aged, he told me that he didn't want to know if he had a terminal illness, and I respected that.  But then as his kidneys and heart started to fail he asked me what was happening.  Remembering his earlier request, I asked him if he really wanted to know.  When he said he did, I told him that his body was beginning to fail and he wouldn't be around too much longer.  We wept together, but a few days later, I asked him to reflect back on his life.  This man had a long history of pessimism seeing the glass as half-empty.  But now knowing that the end was near, he said that he had a good life and was grateful for what he had.  His serenity at the end of his life was a blessing for me and could have never happened if he had hope.So this business of hope and hopelessness can get pretty complicated.  The best definition of hope I have ever read came from: "the anatomy of Hope" by Jerome Groopman M.D..  He defined hope as the belief that tomorrow can be better than today.  That makes sense because everyone, regardless of ability or disability, has the ability to find more joy and gratitude each day.

Seven years ago a driver fell asleep and struck an unsuspecting man named Rick. The accident left him a respirator-dependent quadriplegic, paralyzed from the shoulders down.

His wife, Trish, defied doctors' advice to put him in a nursing home and took him home. With his income eliminated, Trish went back to work full time, leaving her with three full-time jobs - work, wife and mother, and caregiver/case manager.

I first met Trish through one of her amazing postings on the Christopher Reeve Web page at www.christopherreeve.org/community  She will join me for a Web chat at noon EST on 3-31.

Seven years ago a driver fell asleep and collided with an unsuspecting man named Rick. Rick was a husband, father and and engineer. His accident rendered him a respirator dependent quadriplegic, paralyzed from the shoulders down. His wife Trish went against doctors recommendation to put him in a nursing home and instead brought him home. With his income eliminated, Trish went back to work full time, leaving her with three full-time jobs -- work, wife and mother, and caregiver/case manager for a man with severe disabilities.

Eating disorders affect 10 million women and the numbers increase each decade.  But when someone with an eating disorder wrestles for control, the rest of the family often feel out of control.On Tuesday's web chat we will be joined by Dr. Beth Weinstock a psychologist in Narberth who specializes in treatment of trauma and eating disorders.  Today's edition of "voices in the family" will also be on eating disorders and will focus on current research.

 Dear Dr. GottliebMy husband and I have concerns about my adolescent daughter and was hoping you could steer me in the appropriate direction. Our daughter's diet has become increasingly restrictive and rigid over the last two years as she always seems to be trying to lose more weight.  Prior to all of this, she seemed to have a good self image and self esteem, is a heavily involved student and althlete, with lots of friends.  I have underlying fears, as I grew up with a sister who was both anorexic and bulimic for all of our shared teen years.   I lived through the lies from her and the denial of my parents until she was almost dead, twice.  I need to make sure that we intervene if it is appropriate.  SO if you can tell me if any of the things I describe seem like red flags, please help.  If not, I understand and I hope you  can give me some direction for seeking additional advice.

 Several other things have us concerned.  Lately she has been lying and all of our efforts to stop this have been unsuccessful.  Usually the lies are about food and when we confront her with questions, she gives us poor explanations.   When does this become a concern?  I will not fail to act if needed.  Is this just like cheating on any diet or weight loss plan?  When does this become about "control".  I was always told that eating disorders are a mental illness steeped in the need to gain control over a portion of one's life.

  Concerned mother 

Dear concerned, 

You are right, eating disorders are always about control.  Your daughter is trying to control her body, her life and possibly her mind.  But if you are locked in a struggle with her, then you are trying to control from the other side.  When I specialized in addiction many years ago, I watched these same power struggles.  And what I learned was the family thought the problem was alcohol and the alcoholic thought the problem was the family!

Your daughter may well have an eating disorder as they affect one in 20 women between the ages of 18 and 30.  And there are some red flags.  Features associated with eating disorders are perfectionism, depression and low self-esteem. And if your daughter is being deceitful, it's unlikely she feels good about herself.  And one of the biggest red flags is the genetic one as there is more research suggesting a genetic link.   She may have an eating disorder, and any parent with a child like that shares the same sense of being an out-of-control when the stakes feel like life and death.  Most parents emotions range from terror to helplessness to rage and back again.  But because of your history, you have an even more complicated reaction.  As you describe life with your sister, I wonder if you experienced trauma as a child and now not only are you experiencing this nightmare with your daughter, you may be reexperiencing your childhood.

So clearly your daughter has a problem, but so do you.  And I would guess both issues revolve around control, anxiety and helplessness.  And it also seems that communication in the family has broken down behind all of the anxiety.  So let's not make this about food or whether or not she is being truthful.  Let's start by assuming this is a family problem and that everyone is contributing to the problem and everyone has some role to play in resolving.  That way we get away from issues of shame, blame and power struggles.

Ultimately treatment of eating disorders involves group and individual therapy.  The work is hard and the illness his chronic so there is a chance this will not simply get treatment and go away. 

 But your daughter is not interested in treatment for herself right now. So my recommendation is to find a good family therapist who specializes in eating disorders.  And go as a whole family understanding that everyone needs help in order to make changes in the way your family is functioning.  Once your daughter understands that she is not being blamed but that everyone is taking a look at themselves, she may very well develop a different perspective on her own life. 

Of all the many dimensions of depression, what to do during pregnancy is the most complicated as illustrated by the following letter

Q: Dear Dan My family has the depression gene. My daughter has had depression on and off since she was 16. She got off her meds last summer because her husband said she couldn't take them the rest of her life.. Then it came back with a vengeance. Her Dad and I couldn't talk to her, she would get angry Well she wants to become pregnant. Her GYN told her it is better to take medication than to be a depressed pregnant woman and advised her to see her to revisit her psychiatrist. I have had depression since I was 13 off and on, but it got worse through the years. I know what she is going through but her husband doesn't. She goes to work and then goes to bed. This of course has made my own depression worse I blame myself. I don't know how to handle this situation. She is a very intense person and whatever I say she gets angry. So I try not to say much. But she can talk to her Dad much easier than me. I guess I really asking how to help her. Thank you for your time.

Well my first reaction to this very complicated situation is that she should talk with her dad and not you. Makes sense because emotions are contagious and I am sure your anxiety and depression makes hers worse (and vice versa). It sounds like everyone could use a dispassionate and clear minded education about what depression is and what it is not. How to do that is complicated given her anger and her husband's lack of understanding. But whatever is done, I like to see your husband and initiate.

Before I even comment about the medication controversy, you should know I am not a physician and have no medical training. So what I will share it is my professional experience and some of the literature.

There was no clear path about whether a pregnant woman should take medication. Her Gyn is right that in addition to a child being at risk genetically, the depression itself could have an impact on the fetus. At the same time there is also a risk if one takes medication.

As a matter of fact, a study just released last week published in the March issue of the American Journal of Psychiatry showed that women taking SSRIs (antidepressants in the Prozac family) throughout their pregnancy had an increased risk of premature birth. A 20% risk. On the other hand, women with depression who were untreated throughout their pregnancy also had a 20% risk of premature birth.

In an interview, Kathryn Wisner, M.D. one of the study's investigators said that the similarity in outcomes may suggest that the problem is the underlying depression with both groups of women. But that is conjecture on her part.

And this study did not look at other families of antidepressants or what happens if a woman takes medication during one term but not another. Like I said, much more information is needed and because the stakes seem so high, a dispassionate discussion with a professional person seems the place to go at this point.

And whether she takes medication or not, she should strenuously pursue other treatments available including psychotherapy, exercise, group support etc.. She might also want to contact a doctor specializing in integrative medicine to explore non-western approaches.