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Charlie Norwood, a congressman from Georgia, had a press release yesterday that he is foregoing further treatment for his NSCLC. He is a 7-term Republican who is not resigning his seat, and has said in some new reports that he may consider further treatment if he becomes better. The press release states that he will also receive 24-hour nursing care at his home.

I am glad to see the public mention of hospice care for public figures. I always have wondered when you hear about a famous person dying at home if they had hospice services or if they were able to hire their own nurses and physicians to come and visit them. I wished that the hospice philosophy could benefit from more public mentions like this and Art Buchwald.

(Although it should be noted that 24-hour in-home nursing care is not part of the Medicare Hospice Benefit (obviously barring continuous care for crisis), nor of most commercial insurance that I am familiar with. Just don't want any misconceptions since this is public knowledge).

NY Times had a great article about cancer in people under 40. The tone of the article is 'isn't this shocking' mixed in with a little 'but the outlook is good.' I think the best quote is from Lauren Terrazzano when she says, "Cancer is the ultimate form of identity theft." They also link to a site http://imtooyoungforthis.org/ which highlights how to live with a cancer diagnosis at a young age. For those of us in the hospice field, I know we have all seen our share of patients that seemed way too young for cancer. But then is any age a better age for cancer? There is no good age to have cancer. We should caution against being ageist.

MSNBC (via the AP) has a good story on a young mother who has been diagnosed with ALS. I appreciate the highlights on the children coping with their mother as well as links to how to help children grieve. Great acknowledgements of the Pediatric Voice (a title from a talk at the AAHPM)

The Washington Post had an editorial from someone who has been diagnosed with "life-threatening diseases four times." The editorial focuses very well on the patients perspective of being a "blunter" or a "monitor.' New terms to me but the article goes on to talk about how different people want different amounts of information when it comes to their medical care.

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HospiceGuy over at HospiceBlog (a good read if you have not been over there yet) has posted on the NHPCO alert about Bush's new budget and the implications to Medicare and therefore the Medicare Hospice Benefit.

A favorite quote from his post:

That decision will force people like me to focus my energy on the nursing home market in hopes of having enough big profit nursing home patients to finance my admirable but financially unsustainable home patient habit.

He is a pretty clever writer. Much more than me. He gives Drew a good run on being witty.

Why the short post Christian?

Well I also wanted to tell you about the new feature on the left hand column that features stories that come to my RSS/Atom feed through Google Reader. I mark them to 'share' with you the Pallimed readers because it may be of interest to you. Not always so interesting to post a long soliloquy but interesting nonetheless. I promise not to just check everything. I will filter it for you. Unfortunately this service will not come through with the email updates via Feedblitz.

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This is the fifth post in a series previewing the sessions at the American Academy of Hospice & Palliative Medicine's Annual Assembly.

You can see all the posts in the series below:
2/14 - Pre-conferences
2/15 - AM Sessions
2/15 - PM Sessions
2/16 - AM Sessions
2/16 - PM Sessions
2/17 - AM Sessions
2/17 - PM Sessions

Click here for the AAHPM Annual Assembly Brochure 2007 (pdf)

Register soon if you have not already!

(Note: I am not commenting on the lunch time activities. No particular reason.)

Friday, February 16th - PM Sessions
2:15pm-3:15pm

There are a couple of interesting talks with interesting titles here and the one that has me most intrigued is the 'Risks and Benefits of Terminal Illness Acknowledged.' Very cryptic but very interesting. I hope it offers a unique perspective as the title implies. Have not heard the speakers before, but sounds really interesting. This title has me interested: 'A Session for those Not Ready for Self-Care.' Will we learn about caring for ourselves or about how to help others who are not ready to care for themselves, or is this about the loss of independence at the EOL. I am not sure, but Martha Twaddle is a pretty good speaker, so good vibes on this one. Another slightly cryptic title is the one about the 'Pediatric Voice.' I presume this is focusing on making sure that children are involved in EOL issues, but I am not sure if this means 'pediatric hospice' or 'adults at EOL when children are present.' I find both issues interesting but would have to read the detail on the talk before deciding to go to this one or not.

Glad to see there is a methadone talk. i think this is a good idea for beginners to intermediates in this field, and probably a topic that should be present every year, given that palliative practitioners should be well familiar with this opioid as a tool for difficult pain situations. This talk is given by tow doctors from Excellerx (parent of Hospice Pharmacia), so I am guessing this will focus mostly on oral methadone. I am curious about their input on intravenous/subcutaneous methadone, given its lack of availability but possibly better cost-benefit ratios.

I am not sure about the educational value of the PC-FACS talk alone, but I think this is a great service from the AAHPM, and Amy has done a great job putting this out.

There is also a talk on brain tumors in this time slot, but I hear there is a much better one later that day...(shameless plug)

3:30-4:30pm

A little more weight towards policy issues with this session with some of the big guns weghing in (Von Gunten, Herbst, Casarett, Teno, Storey). All probably good talks if these policy areas (Medicare denials, QI, Pandemic Plans) are of interest to you.

Two symptom based talks look promising. The intrathecal talk one is pretty important as we will be seeing (or have seen) more and more implanted pumps for symptom control. I heard Dr. Stearns talk 2 years ago. Helpful talk. Best advice, get to know at least one pain interventionalist near you who is willing to work with the hospice field. I am lucky to have one in Rich Morgan here in KC. I am not sure what evidence the DVT talk will bring that will change my management as we have blogged here about DVT's in the past. (here and here)

4:45-5:45pm

Wow this is getting late in the day. I hope you are all sticking around for the best talk of the day: Palliative Care of the Brain Tumor Patient by myself and Dr. Salacz (Who has 3 talks at this conference - simmer down now!) Other than our great talk, there are some good ones in this session, like the one on ''Management of Addiction" by Crossno and 'Creating Deep Lasting Organizational Change.' I have not heard many of these speakers talk except for Chamberlain. No big comments on the other sessions although the Cardiac Program talk would be good for those looking to specialize their palliative care programs.

Phew! There are a lot of talks this day. Guess no going to Alta for me!

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The British Medical Journal published a very good, well-written overview article on Defining Limits in Care of Terminally Ill Patients by Dr. Ursula Braun and her colleagues. It takes a Problem-Based Learning approach to a common medical scenario: the crashing patient with inconsistent documentation of their wishes and a family with sub-optimal communication. Using this case, Dr. Braun covers the best approaches to building a consensus. Some of the key points made include:

...after acknowledging the situation’s difficulty, (doctors should) present their expert opinions and not shy away from making recommendations because of a misplaced fear of upsetting the patient or surrogate.

I frequently instruct medical students, residents and fellows that pass through my hospice agency that patient autonomy does not mean our professional opinion is unimportant. When it comes to prescribing cholesterol medications, we don't always stop to say, "Now what do you think would be best?" Physicians will say, "Your cholesterol is high, diet and exercise did not work as we hoped, and now you should be on Brand X to decrease your risk of cardiovascular complications. Here is your script." Here professional opinion weighs heavily on the situation.

In an effort to seem completely objective (especially in life and death/EOL/terminal cases) we risk abandoning our patients and their families by not offering a suggestion for best medical course that fits with the patients expressed wishes (if known). The "If it were my mother" question always seemed slightly bogus to me, although it does raise a good point. How would a physician decide to care for their loved one? My standard reply to families or patients is that I would find out what was important to her, weigh the risks and benefits of the medical options given and choose the one that fit best with her goals. So on one hand it seems like a cop out because I won't say "I would put a PEG in my mom." But I do try and reflect the words that the patient or family have used to frame the decision. "Well, given what you said about your mother being fiercely independent and wanting to ride her Harley to South Dakota every year, we should/should not do XYZ"

Also this point was great. I need to make a plaque out of this sentence.

Curative and palliative care should not be dichotomous.

One question I had was this sentence:

Additionally, in some US states patients can opt for do not resuscitate orders out of hospital.

Are there really states where you cannot get a Out of Hospital DNR?

One minor beef I had (more a style point if anything):

For example, when discussing cardiopulmonary resuscitation, it is important to explain that ribs may be broken, burns can occur, success is inversely proportional to length of resuscitation, and the likelihood of returning to the former level of functioning may be small.

I agree with most of this sentence but, I really try not to highlight all the bad things (broken ribs, burns, etc.) because it seems a little bit like a scare tactic. And I have had some patients and families use the excuse that if they die, it wouldn't matter anyway. Instead I prefer to bring up the time of death situation and demonstrate we have two main options:

1) Look at the patient, see that the heart has stopped beating or had a fatal rhythm or that the lungs have stopped breathing and say, "Now we have something to fix." Then the scene becomes one of urgency, chaos and strangers trying to fix things.


2)We can look at the patient, understand all they have been through recently and in their life, realize this is a time when the body may say, "I can't be fixed." And instead of emergency, strangers and chaos, we can work on peace, family and comfort. This may be one of the most important times in this person's life.

Most people understand these differences, and brings up similar issues without getting gruesome or gory.

One other small point that was not fully addressed is the often difficult case of differing physician opinions and communications with families.

Overall great article. I would recommend it as a great overview, introduction article to principles of palliative care and patient-physician communication.
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And in typical BMJ fashion they have some cheeky humor at the bottom of the last page of the article about using a CAGE like questionnaire for Blackberry users called the SHAM Screening Test. I have a Blackberry, but I am 0 for 4 on the questions. Phew!

• Do you get annoyed if you are asked to Stop using your hand held device?
• Do you take your hand held device on Holiday with you?
• Do you get Anxious if you cannot find your hand held device?
• Do you ever Misperceive a sound as the ring tone or call sign of your hand held device?

Kudos to Mark Taylor for the submission to BMJ.

(Thanks to Tom Quinn for the idea for submission.)

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This is the fourth post in a series previewing the sessions at the American Academy of Hospice & Palliative Medicine's Annual Assembly.

You can see all the posts in the series below:
2/14 - Pre-conferences
2/15 - AM Sessions
2/15 - PM Sessions

Click here for the AAHPM Annual Assembly Brochure 2007 (pdf)

Register soon if you have not already!

Friday, February 16th - AM Sessions

Plenary Session
8–9:45 am

Team as a Living Organism: Healthy and Terminally Ill?
Nessa Coyle, NP PhD FAAN & David Giansiracusa, MD
Memorial Sloan Kettering Cancer Center

I think this is a really good idea for a plenary topic because what person has not been in a meeting and thought that the meeting could be going better, more efficiently, more focused, more whatever, and then the thoughts go to what person is somehow impeding your ideal of a perfect meeting (whether that be short, long, whatever). But this talk is likely much more than the team meeting which I like to think of as the family dinner. The focus of this talk seems to be the whole dynamic of the team in all settings, but obviously I picked on the team meeting because that is one aspect that the medical director really gets to see the team in action. I hope there are some good insights here because I think team building and looking out for one another happens in a few special teams, but it takes work. A lot of work to stay 'healthy.' I guess they should have some good analogies given their title. This talk wins second prize for best title. David is a good speaker as well and an all around good guy so this should be a good talk.

10:15-11:15am
Concurrent Sessions

Well there has always gotta be one session that really doesn't get you particularly excited, although this time has a diverse range of topics, not one particularly grabs me and some I have heard in other venues. The Training Program Accreditation is the one that best fits my needs as a Fellowship Director, so I will be there. Lupu and Portenoy have done some great things to move this process forward and any information from them will be helpful for me to hear. The Children's Legacy talk and the Hurricane Katrina talk should both have some great stories and some particular insight if those areas interest you. Bailey and Ritchie's Evidence Based Order Set talk was pretty insightful last time I went to it, but not much has changed in the past few years in EOL EBM. This session is surely recommended for those entering the field or starting new programs.

11:30-12:30 - AAHPM Business Meeting

If you have never been to this, but are planing to be in this field a while, I reccommend you go to this at least once every few years. Great insight into where we have been and where our professional field is going.

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Probably one of the most important palliative care articles to come around in a long time was published last week in the New England Journal of Medicine. It's from a project to improve communication with families of dying ICU patients (article here; supporting editorial here). It's important in a variety of ways, but first--a summary.

The project was a French, multicenter, randomized trial of a communication intervention for families of dying ICU patients. 126 patient/family units were enrolled. Basically the only enrollment criteria was that the ICU attending believed death was inevitable (only 1 patient, in fact, survived) and that some form of limitation of life-prolonging treatment was indicated. At that time the families either received a routine end-of-life conference (held the way it happened to normally be held at that institution) or the family was randomized to the intervention. Their goal was to see if the intervention decreased bereaved family members psychologic symptoms (including PTSD symptoms, depression, and anxiety). The intervention involved giving the family a brochure on death/bereavement as well as having the intervention family meeting. The family meeting intervention is loosely described in a supplement available online (you need access to full-text to see it), was multidisciplinary, and is based on the VALUE framework developed by JR Curtis (Value and appreciate things family said, Acknowledge emotions, Listen, ask questions that allow you to Understand who the patient is as a person, and Elicit questions from the family). You may say that this sounds a little vague and in addition to that you may be skeptical that the docs had a hard time going back and forth from a routine family meeting to a VALUE one. You may be right about this but the researches can say that despite these limitations they found real differences in how the family meetings went, and about the outcomes...

...Including: Intervention group meetings took 50% longer than control meetings (average of 30 vs. 20 mins); families spoke almost 3 times as long in the intervention group meetings ( 13.5 vs. 5 mins). The care patients received after the meetings seems to be pretty similar--median survival was 1-2 days--the intervention group had slightly fewer life-prolonging interventions continued for what's that worth--this is important because it seems that the intervention group family members had better outcomes not because the patients received different care but because of the communication differences. Interestingly both groups felt like they spent sufficient in the meetings and that they had clear information. As for the study's primary outcomes: the intervention group family members did significantly better symptom-wise 90 days after their loved-one's death (lower score on a screening scale for PTSD, and significantly lower scores on the HADS depression and anxiety scales). These improvements were modest, but likely real, particularly given the relatively low N of this study.

It's important because:

1) I'll go ahead and say it: because the NEJM published it--an ICU outcomes trial in which the outcome was the emotional well-being of bereaved family members! This underlies the reality that medical culture is changing into one which more or less supports the integration of palliative care/palliative-care-type approaches to severely ill people. And, like it or not, the NEJM has a certain normative effect--like the NY Times--in defining what is important.

2) While most of us think what we do--you know, talking to patients/families, hearing their stories, supporting them in their grief--actually helps people in real ways, it is nevertheless extremely important to prove that what we do really does help people. Or else why would institutions, payers, policy-makers, and other physicians change or support us?

3) Caveats (below) aside, what was studied here was well-accepted principles of medical communication that are the foundation of all the expert recommendations on communicating difficult information with patients/families, running family meetings, etc: find out what people understand and find important, value emotions/emotional reactions, let people speak. Wisdom and experience have shown that this is a much more humane and effective approach to communication but as per #2 above it is extremely important to empirically support this.

4) Carrying #3 further the trial is important because it's a sort of proof of principle--that you can do this sort of investigation and find meaningful, and important, results.

Caveats, because there are always caveats:

1) There are certainly cultural differences between France and, say, North America and I'm not sure how to interpret this.

2) I don't want to oversell the findings as these are the first of their kind (as far as I know--if I'm wrong PLEASE leave a comment).

3) Beware that people may interpret this as something like "we should spend 30 minutes in family meetings and families should speak for 13.5 of those minutes" (the editorial does promote the idea of increased time). One, the results don't support this, although they do suggest the more time the better. This is my own personal gloss on this but the message from this trial should be the promotion of the family/emotions/values-centered family meeting and not any pre-conception about time or minutes spent doing X. It's how you spend that time--and I guess who does the talking--that matters. At least I'd like to think so...because...

4) It's possible that all the talking did nothing and that it was the brochure that had the beneficial effects. No way of knowing this from the trial. They should have given the brochure to everyone. Giving two separate interventions to the same group makes it impossible to figure out which one was the effective one....

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We are glad you found us and hope you enjoy the information and commentary we provide. If you are here we presume you have a basic understanding of the field of hospice and palliative medicine, and are likely part of the professional field. (Here is a good description of palliative medicine).

Our target audience is the professionals (MD, DO, RN, LPN, LVN, Home Health Aide, ARNP, SW, Chaplain, Administrators, PT, OT, Speech, Pharmacy, etc.) working in hospice & palliative medicine, but we welcome all readers to this blog, including patients, families and other medical professionals outside of this field.

Our goal is to review current palliative medicine, hospice, end-of-life research with a particular focus on publications not from the major palliative care journals. We also highlight important events in end-of-life care from the news media and entertainment arenas. Pallimed is not intended to replace the patient-physician relationship.

Drew Rosielle, MD
drosielle (at) gmail (dot) com

Christian Sinclair, MD
ctsinclair (at) gmail (dot) com

Lyle Fettig, MD
lypafe (at) gmail (dot) com

Thomas Quinn, APRN, CHPN
tquinn152 (at) gmail (dot) com
(former contributor)

Click here if you want to know more about us.

Please email Drew, Christian or Tom to let us know about things we may have missed but should blog about, or to give us general feedback on the site.


We do this in our spare time, for fun and for the pursuit of knowledge and truth (sounds noble!). We have a standard disclaimer that the views we express here do not represent the views of our employers or former employers or institutions that we are affiliated with. Please see the disclaimer and copyright information at the very bottom of our homepage. Our effort here is not to provoke but to inform and have open conversation about some potentially thorny issues. Our clinical care is enhanced by being able to comprehend as much information in our field as possible, which is part of the reason we do this blog. We use our real names and not pseudonyms, because we feel it imparts credibility and responsibility for our words.


So what is the big deal about these blogs I hear so much about? If you are new to blogs the first thing to do is 'bookmark'/'add to favorites' this site in your browser (Ctrl+D in most browsers). You can even add the bookmark to your toolbars in your browser (Firefox, Internet Explorer) so that you can access Pallimed with one click. This is a great start, but the main problem is you have to actively seek the site to get the information. Wouldn't it be nice if the information just came to you?

To get the information to come to you we have a two different options to subscribe to Pallimed:

1) Email

Using a service called 'Feedblitz', Pallimed can provide you with posts as they are written directly to your email box. Just type in your email and click the button and you are done. No signing up for a new account or anything. Give this a try and if it does not work for you then just unsubscribe.

2) RSS/Atom Feeds

If you are a little more tech savvy you can make use of the RSS/Atom feature present on most blogs or news sites. RSS (Really Simple Syndication) and Atom are very similar. You may be familiar with the orange button on many sites that looks like this:




or the icon that looks like this:


Here is a very helpful 3 minute video to explain RSS.

Click To Play

Basically RSS and Atom are computer languages for universal formating of information. It can be read using a RSS/Atom Reader. Many readers exist as separate programs or add-ons to your browser, but you can use Firefox 3.0, Safari or Internet Explorer 7 to do the same thing (links go to those sites tutorials). Those of you on IE6 need to upgrade to IE7 to get the RSS benefit.

Ours is located in the right column and is supported via Feedburner. If you click on this link it will take you to their site to pick your feed options.

Christian recommends Google Reader (especially if you have a Gmail account). It is very intuitive as are most other RSS readers. If all this talk scares you, it really is not that bad, just try it. You will not break your computer.

3) The articles

Most of these articles are not available in free full-text online. Consult your institution's library for online availability. On an individual basis we should be able to provide .pdf's of most articles - email Drew or Christian. You can always find abstracts at PubMed. In time, some of these links may no longer work - let Drew know if you find any dead ones.

4) Navigating Pallimed

We have a search bar located in the left sidebar under the label cloud.

Each post is labeled by common topics we cover here at Pallimed so you can quickly find other similar posts. On the left hand column you will also find a 'label cloud' which lists all the topic labels associated with our posts. Click on a link and see what you find! Many older posts do not yet have labels.

(Added 2/7/7) Also in the left hand column is a feature from Google reader that allows us to share Hospice & Palliative Medicine related stories that come across our desk, but have not yet or may not ever write about.

In the right hand column we also have a link to the Pallimed Archives (where you can browse blog posts by date).


5) Comments

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"). Tell us your opinions and thoughts. This can be a great community for discussion. You can even add comments anonymously, especially if you want to say something controversial. Even something as pithy as 'great post' or 'what are you talking about?' helps us to keep working at the blog day in and day out for you.

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.

If you comment we almost always will comment back. The comment function has a simple verification system to prevent spammers from clogging the site (it has already happened!).

You can find recent comments in the right hand sidebar. (Added 10/4/7)

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 colleagial, 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.

Our full comments policy is here.

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Feel free to email us directly at our emails listed above. Subscribers (via RSS or email) are kept private and the information will not be distributed or accessible to anyone but Drew or Christian. Website stats for visitors are tracked by Google Analytics, but no identifiable information is kept which could identify a user. Pallimed uses 'cookies' to track returning visitors, but again this data will not identify a individual user, nor is it kept over time.

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In anticipation of the upcoming Annual Assembly for the AAHPM, we are going through some site re-design. We apologize for any glitches or inconvenience. Since the site has been up in the old form since its inauguration in June 2005, Drew and I have decided to move forward with some updating the look of Pallimed.

Some of the changes in the past month include (Drew has talked about some of these already but for sake of being complete):

1) New Domain Name - With a domain name comes some amount of legitimacy. The old address (pallimed.blogspot.com) will still work as Blogger is still our host. But with a domain name as simple as www.pallimed.org it will be very simple for our readers to remember our site and ease the informing of new readers about our great content.

2) Donation Button - We here at Pallimed create this content without remuneration. It is a labor of love and of knowledge. Although it sure does keep Drew and I up to date on the latest in our ever changing field. Some of the posts take quite a while to research and create so that you get quality content. And since some of our upgrades do come with bills, there is now a out-of-pocket expense (although minimal). So if you feel like donating that is wonderful and we thank you in advance, but if you just keep on reading, commenting and telling others about it that would be fine too. This site is not and will not be motivated by profit. (Thus no pesky Adsense!)

3) 3-Column Layout - The new version of Blogger has much more versatility built into it and we want to take advantage to bring you the information quickly. With 3-columns there is less scrolling down to get at the information you need.

4) New Color Scheme - We have tried to keep a color scheme of text and links that provides ease of reading. Please give us any comments on the new color scheme and if it works for you (or not).

5) New Logo - Trying to keep with a fresh new look, and better define our brand identity Pallimed is rolling out this new logo. Since we have been using the Pallimed name to bring great content since June 2005, we needed a logo that reflected our commitment. The logo is also clickable so if you get anywhere in the site and want to get back to the home page, just click the log at the top.

6) Welcome Button - Since Drew and I have a hunch that some Hospice & Palliative Medicine people are a bit technophobic (being such great people persons), we added the welcome button to give you an introduction on how to make the site work best for you. Click on it and see where it takes you.

7) Social Bookmarking - To take advantage of common tools in the blogosphere, we have included one-click buttons at the bottom of every post that allow you to save the post using social bookmarking services (Digg, del.icio.us, Google, My Yahoo!, Technorati, Spurl, Reddit)

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I have a rapidly escalating pile of articles to blog that it looks like I'm not going to be able to get into in depth. So, superficially speaking...

1)
A recent Archives of Internal Medicine had an article surveying informal caregivers of dying patients in the US. It gives a sense of the demographics of informal caregiving, what sort of services they used, how they felt about their role, etc. In short, most found the experience taxing, but also personally rewarding & meaningful.

2)
Cochrane recently published a metaanalysis of constipation treatments for palliative care patients. (Image is of cupping points for constipation [a therapy not mentioned in the metaanalysis]--click on the image for its website if you're interested.) I bet you can't guess their conclusions: only a few articles met Cochrane metaanalysis standards, overall scant evidence for anything, poor quality trials, etc. etc. Overall not much is added to the knowledge base other than another cry for quality symptom research.

3)
On the prognosis front Supportive Care in Cancer has a look at C-reactive protein (CRP) & prognosis in terminally ill cancer patients. This was a tiny (n=44) single-institution study. Median survival for those with CRP levels >2.2mg/dl was 9 days; under 2.2mg/dl was 30 days. This association withstood multivariate analysis for what that's worth. Interesting to be sure, but I'm not sure how this is really going to improve clinical management at this point.

4)
The current Journal of Clinical Oncology has an Art of Oncology piece on "truth telling" (article here; supporting editorial here). It tells the story of a young man dying of leukemia and the silence surrounding the fact that he was dying. There's some very good writing here:

Though we may not know the truth of any patients' death, we are deeply woven into their journey. As oncologists, we provide the matrix against which decisions regarding life and death are made and through which communication travels. If we do not serve as open conduits, surely the perilous roller-coaster ride that bends and turns with mortality at every twist will be darker and more terrifying. If we do not speak freely of life and death, we shelter the truth that life and death complete each other's expression. Like light and darkness, they are a pair, as a foot before and a foot behind when walking. As physicians, if our own bodies house fear—fear of death, fear of the unknown—we will subversively transmit this to those for whom we care. By doing so, we hinder the very life we intend to care for, with our own stories. If honesty is a goal, then truth is the wave that carries us there. It is not an easy truth to face, and yet it is our work. We have each signed up to bear witness to the ultimate mystery, the transition from life to death. It falls to us to unravel the reins of paternalism and say what is so.

Thank you, is all I can say, to the author, for writing this.

5)
Lancet Oncology has an editorial asking whether palliative care should replace palliative treatment for cancer in poor countries (no abstract, link here). Despite its provocative theme, it's more or less a plea for increased palliative care training, resources, infrastructure, & know-how in the developing world, and less of an argument that palliative care should replace cancer treatment in resource-poor areas. The reality is, unfortunately, that frequently neither are available. Thanks to Christian "12 days of AAHPM SLC" Sinclair for alerting me to this.

6)
I am now the editor of Fast Facts. David Weissman (my boss, mentor, and all around palliative care go-to guy), who has edited Fast Facts pretty much since their beginning, deeply honored me by offering me their editorship. Fast Facts are a tremendous compendium of palliative care know-how and I look forward to continuing David's tradition and high standards. If any of you have ideas for Fast Facts, or are interested in writing one, please email me.

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(Late update: the full text of the article is available at BE's website here.)

Pallimed goes philosophical for a single post. Back to the literature next time.

The latest Harper's magazine has a provocative editorial by Barbara Ehrenreich about hope (This issue--as far as I can tell the essay is not available online...so 20th Century!) Specifically--against hope. Well, not hope itself but the culture (& industry) of hope-positive thinking in the US.

(First an aside which will take up most of the post...)
...Which is to highly recommend her essay from a few years ago "Welcome to Cancerland" which pillories Breast Cancer Inc. and its infantalizing pink ribbons and teddy bears, the cult of survivorship, makeovers for chemo patients, and the incessant positive narrative of hope&cure. These observations came out of her own diagnosis and treatment for breast cancer.

Some of her choicer quotes:

So pervasive is the perkiness of the breast-cancer world that unhappiness requires a kind of apology, as when "Lucy," whose "long term prognosis is not good," starts her personal narrative on breastcancertalk.org by telling us that her story "is not the usual one, frill of sweetness and hope, but true nevertheless."

For those who cease to be survivors and join the more than 40,000 American women who succumb to breast cancer each year-again, no noun applies. They are said to have "lost their battle" and may be memorialized by photographs carried at races for the cure-our lost, brave sisters, our fallen soldiers. But in the overwhelmingly Darwinian culture that has grown up around breast cancer, martyrs count for little; it is the "survivors" who merit constant honor and acclaim. They, after all, offer living proof that expensive and painful treatments may in some cases actually work.

[T]he mindless triumphalism of "survivorhood**" denigrates the dead and the dying. Did we who live "fight" harder than those who've died? Can we claim to be "braver," better, people than the dead? And why is there no room in this cult for some gracious acceptance of death, when the time comes, which it surely will, through cancer or some other misfortune?

Note that BE is not arguing cancer is ok & we should just get used to it (she argues just the opposite). Instead, she's addressing the insistence (in popular culture in general, and in Breast Cancer Inc. specifically) on 'positivity,' cure, hopefulness, the-next-treatment, being-happy, "getting tested," "let's do something about this," etc. BE found cancer (& its treatment) to be a horrible, painful discontinuation in her life, and wishes, essentially, that the popular discussion of cancer could contain this reality, instead of (in the case of breast cancer literally) cosmetically painting a happy face on it all and insisting on "hope," "being positive," etc. I personally struggle with this too. I firmly believe death is natural (who doesn't I guess...), not in the sense of being happy/virtuous/good/healthy, but, in a very deep way a meaningful part of life for our species. Suffering then, along, with death, is also an absolute and inevitable, natural, part of life. "Meaningful," "natural," do not necessarily mean happy/fun/good--these concepts don't really enter into it. Why not, then, allow cultural space to address this straightforwardly, in a way that doesn't suggest that those who die of cancer are failures or who have been failed by medicine/The System, and that death, shudder, is OK. Not happy/fun/good OK, not let's stop working to forestall death via scientific/medical progress OK, but OK nonetheless. It's what happens to us mortals. If this doesn't make sense, well then rest assured I'll be back to blogging research ASAP.

...Anyway her latest editorial basically continues this point in her typical Ehrenreich cranky, idiosyncratic, and contrarian way. Worth the cover price of a Harper's. She ends the essay with:

The trick, as my teen hero Camus wrote, is to draw strength from the "refusal to hope, and the unyielding evidence of a life without consolation." To be hope-free is to acknowledge the lion in the tall grass, the tumor in the CAT scan, and to plan one's moves accordingly.

**I was just thumbing through the American Cancer Society's guidelines on nutrition and exercise for cancer patients--they explicitly define "cancer survivor" as anyone who has been diagnosed with cancer and is still alive. Technically true, but inclusive of those patients who are, like it or not, dying from cancer.

I guess you're either a survivor or nothing.

Other Pallimed articles with consonant themes here & here.