Tuesday, March 4, 2008
Author Eleanor Clift has written what looks to be a fine book titled: Two Weeks of Life: A Memoir of Love, Death and Politics. (Not related to the recent film Two Weeks) USA Today featured her book which contrasts the private dying experience of her husband and the public experience with Terri Schiavo. The book features some writings from her husband, Tom Braziatits, as he reflected on his illness. The USA Today article does a splendid job not perpetuating any hospice myths, and Ms. Clift (on the National Hospice Foundation board) has some wonderful quotes in the article. her are just a few that capture her hospice experience:
Out of habit, she says, "I found myself asking, 'Tom, did you see my Diet Coke?' I knew he wouldn't answer, but it felt familiar."And my favorite, because it has been a statement I have echoed since early in my palliative medicine career:
"This aspect of life, the dying part, will happen to us all, and it's time that we get acquainted with how you do it," Clift says.
"As soon as I say it, I realize of course, that's exactly what he is doing. He is actively dying, and it is not a passive exercise, a slipping away. He is working at it."
Clift recalls being surprised he was so close to death, given that the hospice had just delivered the biggest bottle of Robitussin she had ever seen. Surely her husband was going to live for a while, or they wouldn't have given her such a big bottle.
Death, she writes, deserves "the same honesty and humor we accord all milestones."When families or patients are struggling with finding meaning while dying, I often compare death to one of life's many challenges and milestones. Being born, the first day of school, puberty, going to college, getting a job, getting married, having children, and many other times in life present great challenges that require personal strength, willpower, endurance, support from friends and family, acceptance of things you cannot change, and these are all celebrated in one form or another. And because of these milestones we become who we are right now; they change us. Death and dying shares much with these situations, but does not get celebrated or respected in the same manner, so I applaud Eleanor Clift for broadcasting this message.
It is always interesting when the medical article from JAMA that gets the most press attention is not the major original, NIH funded, multi-center trials, but the 'lowly' research letter. Of course I am using 'lowly' in single quotes, because these letters often highlight important clinical (and social) issues that may never get enough funding to become of of the big shot articles. This week JAMA highlights a MIT study on Influence of Cost of Placebo Efficacy by Dan Ariely who has written a book called "Predictably Irrational." (Yes, that is the author in a picture from his website in a pleasure/pain suit). The WSJ blog covers the study well, so I won't rehash their review. The findings demonstrated subjects rated more pain relief from a standardized pain mechanism when they were told they were getting a $2.50 medication versus a 10 cent medication. I think this helps confirm what many health care providers have seen anecdotally.
It would be interesting to highlight how this study might be viewed from a hospice (or insurance or universal health care) lens. If you added a meta-level experiment which polled observers (of the experimental subjects) which medication worked better would the observers have the same placebo bias favoring the expensive medication. My hypothesis would be no, especially if the observer was told they were actually paying for the medication for the subject.
Check out blog.bioethics.net recent post on the Academic Medicine article on how medical schools make students less empathetic. (or is it empathic?)