Monday, August 31, 2009

Mezzo Cammin

Henry Wadsworth Longfellow was born February 27th 1807. In 1831, he married Mary Storer Potter. In 1835, Mary had a miscarriage and died a few weeks later. Several of Longfellow's later works were influenced by his grief over this loss. One such work was "Mezzo Cammin" (below).

Half my life is gone, and I have let
The years slip from me and have not fulfilled
The aspiration of my youth, to build
Some tower of song with lofty parapet.
Not indolence, nor pleasure, nor the fret
Of restless passions that would not be stilled,
But sorrow, and a care that almost killed,
Kept me from what I may accomplish yet;
Though, half-way up the hill, I see the Past
Lying beneath me with its sounds and sights,--
A city in the twilight dim and vast,
With smoking roofs, soft bells, and gleaming lights,--
And hear above me on the autumnal blast
The cataract of Death far thundering from the heights.

Mezzo Cammin translates to middle journey. It comes from the opening line of The Divine Comedy. "Nel mezzo del cammin di nostra vita" ("halfway along our life's path") (Longfellow was the first American to translate The Divine Comedy and you could make parallels between the two poems.)

While poetry is definitely open to interpretation, I think this poem has a sad but still hopeful message. Longfellow sees that he has not accomplished all that he aspired to do in his youth. He attributes this not to any flaw in his character, but to "sorrow, and a care that almost killed", likely the death of his wife. But there is still hope that he may yet accomplish his goals.

Now, half way through his journey, he looks back at the Past. Maybe it's not so bad? "A city in the twilight dim and vast, with smoking roofs, soft bells, and gleaming lights." He looks up to the future and sees Death but it is far away.

When I first read this poem, my immediate impression was that Longfellow saw himself at a turning point in his life. He had been living with his grief for some time and he felt he could not be productive. It feels like he is passively looking behind him at the past and ahead to the future and seeing that he can still go on and accomplish what he has set out to do. He is starting to find hope again after a great loss. He sees (actually he hears) his end but this is far into the future. Realistic but not pessimistic.

Monday, August 31, 2009 by Amber Wollesen, MD · 0

Why You Should Comment on Blogs and How to Comment

(cross-posted from the Main Pallimed Blog)

For the many readers of Pallimed who have not commented on the any of the blogs (Main, Arts, or Cases) I would really encourage you to break your silence and be proud to say 'long time listener, first time commenter.' Here are some of the reasons why you should comment on blog posts:

1. Comments Are Peer-Review: Discussing a counter-argument to the original post helps balance the viewpoint and encourages the writer and other comments to better define the original point.

2. Comments Make a Community: By contributing you know are part of a small network of Pallimed commenters which provides a foundation for a growing community. Often times the commenters answer each other's questions before any Pallimed writer gets a chance to reply.

3. Comments Guide the Content: Sure blog topics are what we decide to write on, but how we decide to write on is influenced by great comments which open up new areas of interest.

4. Comments Are Currency: Comments help any blog writer realize they are not talking into thin air, which is what it feels like when you first press 'publish post.' And that currency can be cashed in as goodwill from any of the blog writers. If we get a request for more info or a favor from someone who comments often, we will be much more likely to reciprocate.

5. Comments Make a Better, Smarter Blog: Comments often lead to new resources, new links and new insights making the blog a better resource for everyone. Also like a huge crowd sourced editors desk, if you find a broken link, a misspelling, poor grammar, tell us. We'll fix it, then thank you for helping all future readers.

6. Comment Make you a Pallimed Author: Drew started this whole thing, but Thomas Quinn, Lyle Fettig and Christian Sinclair (me) all started out as commenters before becoming formal contributors.

Barriers to Commenting:

"I didn't know I could make a comment"
-Well now you know. And knowing is half the battle.

"I don't know how to comment"
-See below.

"I don't have anything important to say."
-A comment doesn't have to be a long counter-point, it can express general agreement, a variation on a theme, a new question, a request for blogging on something different, etc.

"I am concerned about putting my real name online"
-Comment anonymously. Don't say anything inflammatory. Say anything you would be willing to defend on the radio or in court. Talk about thing more generally. But using your own name actually establish you as a thought-leader and for continuity purposes lets us know who is doing the talking. Is anonymous one person or a 45 people?

How to Comment on a Blog Post:

Pallimed has a comment function (at the bottom of each post) that allows you to give us feedback on each post.
Just click on the "comments" link at the end of each post (the link usually tells you how many comments have been left so it says, e.g., "0 Comments" or "1 Comment").

Comments Policy:
The editors of Pallimed reserve the right to remove any comments we deem offensive/hateful, mean-spirited, commercial, or in any other way inappropriate. This blog is intended to foster collegial, well-informed discussions about research and news relevant to clinicians working with patients facing severe/life-limiting diseases: it is not a forum for discussing individual cases or airing complaints or concerns about specific cases (whether from the clinician, patient, or family perspective). Such comments will be removed at the discretion of the Pallimed editors. Any posts older than 14 days are moderated to reduce spam.

We ask that you refrain from providing specific details about cases because of HIPAA restrictions. But if you want to discuss a case more broadly, that would be more appropriate.

Our full comments policy is here.

by Christian Sinclair · 3

Monday, August 24, 2009

"The Woman Who Decided to Die"

Ronald Munson is a bioethicist who has worked for such esteemed organizations as the National Institutes of Health and the National Cancer Institute. He has also authored several non fiction books, as well as one of the most widely used medical ethics texts in the United States. His newest book "The Woman Who Decided to Die: Challenges and Choices at the Edges of Medicine" was published in 2009 by Oxford University Press.

When I read the prologue, describing that the flow of the book would be ten scenarios of real world moral dilemmas faced by Munson himself, I was pretty eager to jump in.

While the stories themselves were extremely well written and even page turning in their narrative form I was surprised with how common place I found them. I was expecting moral and ethical dilemmas that would spur hours of discussions amongst my colleagues. What I found were stories more geared to a non medical audience. For those of us in the trenches, these are a part of our daily experiences.

For instance, there was a 31 year old woman who opted to not pursue further chemo. Now it was a little edgy that she decided not to bring her husband into that decision, but I'm pretty used to people not wanting to pursue chemo, even if doctors know it will help or even with a chance of cure.

Another woman with a schizophrenic break, was a suicide risk and was committed against her will into a psych unit. Yep, pretty standard.

I'm probably sounding too critical. It is a very well written book, I just think it is my career in palliative medicine that skews the "wow" factor.

Probably the most interesting story I found was about an inmate who had been convicted of murder (that of a woman and her child), who was admitted from prison in need of a heart transplant. I did find myself wondering what the outcome would be, as different states have actually taken different approaches to this exact scenario. California has transplanted an inmate to the tune of an estimated cost of 2 million to the state, while as Arkansas denied a transplant to a inmate, who then died of liver failure. You'll have to read the book to see what Munson suggested at an emergency ethics meeting regarding this case.

This review would not be complete without mentioning the narrative I had the most trouble with. The story was of a man with throat cancer, who had communicated with family and friends that he wouldn't want to be kept alive if his quality of life was not an acceptable one. Things progressed, he had a final surgery which removed most of his tongue and half of his face (both upper and lower parts of his jaw) and was on life support after surgery. He was dying anyway of cancer, and his wife stepped up to advocate his wishes.

What happened next is what troubled me. In this situation I would expect a palliative care consult, a review with medical staff and nurses for a planned extubation with family at bedside for the switch to comfort measures. Instead something clandestine occurred. We aren't quite sure, but the doctor was in the room alone, and then comes out saying his bleeding had worsened, blood pressure dropped and he died. WHAT? The implications was that this doctor actually did something to hasten death. Even more alarming were these last sentences in this chapter;

"Patients are given large doses of morphine to reduce their pain. The drug also slows respiration, so an amount effective in controlling pain can, in a weakened patient, hasten death"

I nearly jumped from my chair. Morphine used as an amount to effectively control pain does not hasten death! When will such fallacies quit embedding themselves into literature and the media. I expect such things from a non-medical author, but clearly Ronald Munson,while not a clinician, is experienced in the medical world.

Perhaps these were stories from the edges of medicine, but I'd almost guess that like the galaxy expanding, the edges he knew are now just generally accepted principles. It is the new edges we deal with now that I hope to someday see in print.

Monday, August 24, 2009 by Amy Clarkson · 4

Monday, August 17, 2009

Boy Interrupted

In 2005, Dana and Hart Perry's 15 year old son, Evan, committed suicide after a 10 year struggle with bipolar disorder. As the Perry's are both filmmakers, Evan's entire life (literally from before birth to his funeral) had already been recorded. They added interviews with family, friends, teachers and clinicians and made the documentary Boy Interrupted. It was an official selection of the 2009 Sundance Film Festival and premiered on HBO August 3rd. (It can now be seen at HBO On Demand for those interested.)

At age 5, Evan began talking about death. He was described as having an obsession with death and often talked about killing himself and others. He was first diagnosed with depression and started on Prozac. In the documentary, his teachers describe his behaviors. They describe him as an intelligent and creative boy. He wrote plays about death and journaled about his feelings. Below are two of the poems found in Evan's journal, written around age 8.

Sometimes I feel like
an owl in the day.
Just let me say
I want to end my life
with this knife.
But this is only sometimes
But this is only sometimes

Sometimes I feel alone
And no one cares for me
Sometimes I feel that
I'm in the darkness
And nobody can see me

At age 10, Evan nearly jumped off the roof of his elementary school, in an attempt to commit suicide. At that time he was admitted to a psychiatric facility and diagnosed with bipolar disorder. After being started on lithium and living away from home at Wellspring, a school/group home, Evan improved and for several years did very well.

Meanwhile, the documentary tells the story of Scott Perry (Hart Perry's brother) who also had issues with depression and committed suicide at age 21. They interview his fiance and mother (who discovered his body but does not at all recall what happened that day). Added in are interviews that Hart Perry did in 1971 (when he made a documentary on the making of the sculpture that was placed on Scott's grave). The documentary makes a point to show the parallels between the two suicides through showing similar comments made then and now. The interviews (those in the 1970s and the current ones) actually take place in front of the same painting.

After his lithium was tapered down in an attempt to come off of it, Evan jumped from his bedroom window, killing himself. His funeral is included in the documentary.

Some reviews have called this film heartbreaking. It's definitely very emotional and quite disturbing. It's an excellent film but wasn't an easy watch. (Childhood mental illness, suicide, grief stricken family and friends. Need I say more?)

At the beginning of the film, you see Evan's family cutting down a tree and turning it into beams of wood. You don't find out until the end that these beams go into making a barn at Wellspring (the facility that his parents credit for keeping Evan alive for years). I think it is interesting how the tree is used the documentary. It's cut down and cut apart at the beginning of the film and we don't really understand why. At the end, the destruction is turned into something. Like a heart breaking experience turned into a documentary. It ties the film together.

Below is a scene from the beginning of Boy Interrupted.

Monday, August 17, 2009 by Amber Wollesen, MD · 0

Monday, August 10, 2009

Lou Gehrig

There aren't too many people that have a disease referred to by their own name. However, such is the case of the all star baseball player Ludwig Heinrich Gehrig, or Lou Gehrig. Born in 1903, Lou played for the New York Yankees until being diagnosed with amyotrophic lateral sclerosis at the age of 36.

This post though isn't about him or his disease as much as it is about the idea of hope.

There's an intriguing post up on ESPN entitled "Sincerely, Lou" which documents correspondence between Lou, his wife, and physician during his 2 year battle and ultimate death from ALS. The site has both a short video summarizing the letters as well as copies of some of those letters for readers to peruse.

Reading through all the letters myself I was struck most of all by the concept of hope.

This is evident in several ways. One way to search for hope is to look for survivors. Lou does this in his letters, telling his doctor about people he encounters with either presumed ALS or other similar muscular neuropathies that have been cured. Like little ornaments of hope, these names continue to crop up during his correspondences.

Another way people search for hope is in cures themselves. I wanted to laugh and yet felt a strange pity reading through all of the types of cures that Lou tried. He took everything from high dose vitamin E and B, to histamine injections, drinking raw vegetable juice, apple seed oil, heat treatments, etc. With each new possibility he'd write to his doctor asking advice, sometimes trying them and other times passing them up. Almost every letter included some talk of proposed treatment and new research.

Probably the most startling display of hope comes from the direct questions, pleas and responses between the 3 parties. I have included excerpts from the letters, which were made available to ESPN through the Rip Van Winkle Foundation.

Here is a brief correspondence early on in the course. Lou had written asking prognosis questions to Dr. Paul O'Leary. After briefly discussing the likelihood of improvement Dr. O'Leary writes, "there is no need of my filling you with a lot of bunk about time factor...they are those things that cannot be determined on a numerical basis because they vary in each case." (Dec 8 1839) To which Lou replies, "Thanks for that swell and most encouraging letter. Up until now, I was under the impression that every inch of ground lost could never be regained, but...having it confirmed by you...I will be well on the road to recovery very shortly"(Dec 19 1939)

However as decline occurs he reaches out again for the truth. Lou writes,"Please don't judge me a cry baby, or believe me to be losing my guts, but as always I would like to know the actual truths and not to continue to receive encouraging reports which have little or no chance of materializing, or to continue to live in false hopes...PLEASE reveal to me the honest opinions."(March 31 1940)

The doctor's reply, "half of the patients with this disease derive definite relief from it...I think you must keep plugging along... you must realize that there will be days when you do not seem so good, but I am sure that such days will become of shorter duration and further apart."(April 8 1940)

Ironically the doctor sent that letter before receiving the following from Lou's wife Eleanor. She pleads, "I believe we should keep him on the optimistic side by hinting about other cases on record which have become practically bedridden, and then gradually improved because of some mysterious working of must be very difficult for you to answer his last letter to you, and I feel we must all lie like mad. I want him to keep a thread of hope; there is no point in adding mental torture to the horrible experience he is now going through."(April 9 1940 ) (Emphasis mine)

Dr O'Leary privately responds to Eleanor,"I have always disliked to tell falsehoods, but I feel that with Lou we must keep his morale up, not only for the benefit and help it may be to him, but also in order to save him the shock that accompanies such discussions" And yet the real truth, "Our frank cases of AML here have not done well. "(April 16 1940)

How often do we hear this excuse for hiding prognosis, that the truth's shock would actually hasten the disease process!

This final exchange shows that even as Lou reaches out again for truth, a conspiracy of sorts between his wife and physician continues to prevail. From the context of the letters we know that Lou has even begun to choke on his food during this time. Lou seems to sense reality and asks, "one cannot help but wonder how much further this thing can go and I wish you would again drop a note to you thoughts and percentage of making a proportional recovery"(Jan 13th 1941.)

On the same day Eleanor separately writes, "I think he asked you again his chances of partial recovery in his letter..have him sold on the idea that he has a fifty fifty chance for partial recovery...I want him to always have this I would appreciate your falling in line with me and together I am sure we can keep him from mental torture"(Jan 13th 1941)

The doctor evidently goes along with Eleanor's request and responds, "I cannot do other than remind you of the fact that other patients have gotten down to the point where they have been in bed...before started to note a favorable swing upward. The probabilities are that you belong in this same group."
(Jan 17th 1941)

What an tremendous example of hiding truth in the name of hope.

Lou Gehrig died June 2, 1941, possibly still believing in that 50/50 chance of recovery.

Special thanks to Pallimed reader Susan Lysaght for alerting me to this story!

Monday, August 10, 2009 by Amy Clarkson · 4

Monday, August 3, 2009

Death at a Funeral

When I posted on Eulogy, someone commented that it seemed a lot like this movie, Death at a Funeral. I decided to check it out.

Death at a Funeral is a dark comedy that came out in 2007. Like Eulogy, the movie surrounds the death of a family patriarch and the secrets that come out in the aftermath. The entire movie takes place the day of the funeral.

The film focuses on a few of the family members. The deceased's son, Daniel is always playing second to his famous brother, Robert. He is trying to get away by moving himself and his wife out of the family home. He is to deliver the eulogy, but everyone really wants to hear from Robert.

A niece Martha with her fiancee Simon are planning on using the funeral to make a good impression on Martha's father before they announce their engagement.

Things start to go haywire when Simon takes a pill thought to be Valium but which is actually a designer hallucinogenic drug. Then a mysterious little person (I think this is correct term) shows up with a secret about the deceased and attempts to black mail his sons. I won't ruin the end but the trailer below gives some away.

Like Euology, this film also has a similar, dramatic eulogy scene at end, and the message of the two is also similar. He wasn't perfect, but he was still a good man who loved his family and did the best he could. Below is the eulogy.

"My father was an exceptional man! He may not have been a perfect man, but he was a good man, and he loved us. All I wanted to do today was to give him a dignified send-off. Is that really so much to ask? So, maybe, maybe he had some things he liked to do. Life isn't simple, it's complicated. We're all just thrown in here together, in a world full of chaos and confusion, a world full of questions and no answers, death always lingering around the corner, and we do our best. We can't only do our best, and my dad did his best. He always tried to tell me that you have to go for what you want in life because you never know how long you're going to be here. And whether you succeed or you fail, the most important thing is to have tried. And apparently no one will guide you in the right direction, in the end you have to learn for yourself. You have to grow up yourself. So when you all leave here today, I would like you to remember my father for who he really was: a decent, loving man. If only we could be as giving and generous and as understanding as my father was. Then the world would be a far better place."

Monday, August 3, 2009 by Amber Wollesen, MD · 2