Wednesday, November 30, 2011

So Much For That

For this book about how a family navigates the twisty world of the health care system during a crisis the reviews from our group were mixed.  We all agreed that the author was not the best writer we've ever read and that her  editors should have talked her into losing a story line that was rather stomach churning and didn't really add to the flavor of the character's journey.  However, we talked about the subject matter for almost two hours, skipping over our normal social chatting.

The book touched on themes of the meaning of marriage, parenting, familial duty, friendships during a crisis and self worth.   Who comes around when the going gets really tough?  Lionel Shriver, our author and a woman, suggests it is not always whom you think it will be.   At one point our main character, Shep makes a list of his wife's friends and puts them into groups, distant friends, close friends and "family".  As they spend a year on her  chronic illness the people in those buckets shift.

We discussed how that happens in real life, one of our members shared the heartbreaking story of a beloved uncle with a devastating illness and she tried everything to be of help and was pushed away.  It sounded like the Uncle and his wife were in hunker down mode and decided that they would handle it on their own.  Granted, those we love that are dying don't have an obligation to make us feel better about it but it is understandable that the inability to spend time with this loved one made the process harder for those that love him.  Another member shared an all too true feeling that when someone you know becomes ill you aren't sure what to say and also you aren't sure if you're really welcome or if you're actually intruding on their intimate and personal space.

We agreed, that statements like "let me know if there's anything I can do" puts the burden back on the patient and or their caregiver, and that it is better to fill a need if you see it.  Something a small as dropping by to mow the lawn or leaving food.  Communication with the patient or the caregiver is key, because

Another member who spent a significant time in the hospital system (but wasn't dying - whew!) shared that when visiting someone in the hospital you should go, but be prepared for anything, including leaving without seeing your person and come with stories.  Do not expect the patient to entertain you.   (I really had to scan my memory to make sure that when visiting her I wasn't guilty of making her do all the work, and I think I get a B+ for my hospital visits.  She still had to run through the medical update with me, but then we moved on to other non-hospital stuff which I'm hoping was enjoyable.)

We think that technology can be used to the patient and families benefit, in that by using social media or a blog the burden of providing the current medical update to everyone can be done once and people can check in without intruding.   I know of several situations where the documenting of the experience has been helpful for the families and is a heartbreaking but wonderful account of their story.  It's a bit voyeuristic, in that you're putting your personal thoughts and state of being out for the world at large to read, but not fielding 800 phone calls a week would be nice.

Back to the book, we all felt that Shriver's descriptions of the inner thoughts of her male characters were too flat and overly "mannish".  Meaning that she didn't seem to give men credit for being well rounded beings and that descriptions of why they loved their wives were limited to "possessing her body" and other physical aspects versus the reality of a complex relationship between two people who have found a connection and decided to work to keep it alive.  Her descriptions of sex from the male point of view were off putting.  (And, I am no prude!)

One important theme in the book was money.  Her points seemed to be that the healthcare system fails to consider the true cost of treatment vs. the value and will continue to push option after option for something to  do and discussions about money are shied away from at the least.  We all know that no doctor will put hard cold odds on your chances of survival or give you a solid timeline, but the soft way of discussing the facts can be very detrimental to the family and the patient.   Shep was made to feel like he was being crass when he brought up the subject of the cost of an experimental medicine vs. the likelihood of any positive results.  As ugly as that conversation would be, we (as a group) agreed that is it one we hoped we could have with our care team.

So, while our opinions on the book were varied, the sentiment seemed to be "we didn't hate it, and there was a lot to talk about."   I will put forth that if you are currently experiencing or just recently experienced a loved one with a chronic illness this book is likely not for you.