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1)
Journal of Clinical Oncology has a wonderful 'art of oncology' piece written by a social worker about the 0-10 pain scale (free full-text appears to be available). It describes her experience being in severe pain in the hospital and, essentially, having her experience of pain, her suffering, erased by her care-providers' insistence on talking only about her pain rating. She has no complaints about her actual pain management - people took her seriously and treated her appropriately - it was the lack of engagement with her about her experience that she felt like the 0-10 scale engendered.

"Sometimes, consoling presence is the needed medication—something I did not find in reporting and noting scores of 0 to 10."

She contrasts this with previous experiences with pain:

"Before I had renal cell carcinoma, I had a "10" that was much lower than my current "10", which was derived after I survived a nephrectomy that included the removal of a rib. For several months after that operation, I could have made a strong argument that bone pain is a 20 on a scale of 0 to 10. A thoughtful urologist worked with me to help me to understand my pain, to frame it in terms of the day before, not in terms of my never to return prerenal cell carcinoma normal. My "10" got ratcheted a little further with treatment for breast cancer and a little more with a knee replacement. Peripheral neuropathy and orthopedic issues have also done their part to increase my tolerance. Through all ofthese experiences, what has been extraordinarily helpful to me is the patient presence of physicians, including pain specialists, who sit and listen, who help me assess and redefine, through conversation, what is tolerable and what needs pharmacologic intervention. Their willingness to talk about what causes particular types of pain and to evaluate the effects of pain on other areas of my life inform my choices with dignity and integrity."

A welcome reminder that as clinicians, faced with the suffering of our patients, our impulse to measure, intervene, and "fix" needs to be tempered by our deeper mandate to listen, console, and offer presence.

2)
On the medicine-ethics-government-law front, the NEJM has several pieces about the recent US Supreme Court abortion procedure ruling including one by George Annas (free full-text available). The article mostly summarizes the history of US Supreme Court decisions on reproductive rights and abortion rights, following how the concepts of privacy, liberty, and respect for physician-patient decisions about health played in those decisions. Annas' take on the decision is that it is rather remarkable insofar as it upholds a law which criminalizes physician behavior (performing a specific medical procedure) which at times is necessary to protect the health of a patient ( this is per the ACOG) and offers no protection to physicians even if they perform the procedure to protect a patient's health. That is, it is government intrusion into the doctor-patient relationship to the highest degree (criminalizing, albeit in a very narrow situation, a physician acting in the best interest of a patient). Of course society/the state has an obligation to promote and protect life - this is what the abortion debate is all about & I respect that & sympathize with that as I contemplate the morality of euthanasia or assisted suicide. I'll point out however that this law does not outlaw abortion, declare it immoral or an affront to human dignity, or even (really) restrict the circumstances under which it can happen. Instead it criminalizes a procedure which is rarely necessary to protect the health of a sick person & the Supreme Court upheld it. Why am I bothering about this? It's because we live in a country in which congress and the president have seen fit to go out of their way to interfere in the terminal care of a single person and I get a little queasy whenever something happens which appears to further state interference in our profession. End of life issues rank only second in the US in controversy to reproductive ones. Annas says it best:

"Now that states (and Congress) have been given the green light to regulate medicine on the basis of their own views of morals and ethics, detached from medicine and science, these legislators may have to make real decisions. For the sake of their patients and the profession of medicine, physicians will have to pay more attention to politics."

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Here is a listing of many online resources for prognostication near the end-of-life. This post is made after a request from a audience member at a talk I gave recently on Evidence-Based Prognostication. My plan is to update these links and qualify them over the next several weeks. Please feel free to add more in the comments section or email them to me.

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I'm traveling the end of this week as well so this will likely be another sparse posting week for me. I'll be at the CSPCP's Advanced Learning in Palliative Medicine conference ( .pdf here) - say Hi if you run into me.

A couple of articles from Annals of Oncology...

1)
First is a look at using the B12/CRP index for prognosticating in advanced cancer. The index ("BCI") is the product of multiplying the serum vitamin B12 level (pmol/l) by the serum CRP level (mg/l) which has been looked at in small, exploratory studies. This article examines the prognostic significance of the BCI in a larger study. It was a prospective, multicenter, UK study looking at 329 adult patients with advanced cancer, no longer undergoing antineoplastic therapy, who were being seen by a palliative care service. As you'd expect, this was a sick bunch of patients: mean age 69 years, most with ECOG performance statuses of 3 or 4, median survival of 42 days. Based on the prior research they divided the subjects into 3 groups: low (better prognosis) BCI (<10,000), intermediate (10-40,000), and high (>40,000). There was a statistically significant trend for survival across the groups - the lowest BCI patients had a median survival of 71 days and the highest had a median survival of 29 days. 90-day mortality was 80% in the highest BCI group and 60% in the lowest.

While this is physiologically interesting, and I'm sure valid (i.e. the higher your BCI the worse your prognosis), I'm not sure how clinically useful this currently is. Is there a big need for an index (particularly one which involves phlebotomy) to differentiate between advanced cancer patients likely to die in one month versus two? This study also embodies one of the toughest aspects of interpreting (even superbly done) research conducted outside of the U.S. - who really are these 'palliative care' patients? There are sufficient differences between U.S. and UK practices and "palliative care"-labeled populations to not know how these data apply to patients that I see, or to US hospice patients with cancer, etc. In addition it would be interesting to see the BCI studied in other populations, particularly ones with longer prognoses (advanced cancer patients undergoing therapy, at the time of diagnosis of metastases, at the time of initiation of "second-line" chemotherapy, etc.).

Christian - as our resident go-to guy on prognostication - any thoughts?

2)
Second is a look at the natural history of malignant ascites . It is a retrospective, single-institution (in the UK) look at characteristics and prognosis of 209 patients with malignant ascites. Mean age was 67 years and at this institution most had their ascites diagnosed concurrently or within the same month as their cancer. Median survival across the entire series was 5.7 months but this varied greatly by cancer type (nearly 2 years for ovarian, a little over 6 months for breast, ~3 months for GI tumors or cancers of unknown primary). Lower albumin and liver metastases both worsened prognosis significantly, although the paper didn't quantify by how much. For me the most interesting aspect of the study was the survival in breast cancer patients: I'd always been taught malignant ascites generally portends a very poor prognosis (ovarian CA aside) - a few months - just like this study found. Conversely one always has the sense that patients with breast cancer do much better than those with most other solid tumors and this study bears this out. Due to this being a single institution study however I wouldn't generalize much about the actual number of months of survival.

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Kevin MD has been keeping the blogosphere up to date on the sudden loss of two anonymous physician bloggers, Flea (archived blog) and Fat Doctor. For those of you not following all of this, basically the medical blogging community comes in two flavors, anonymous and not.

The anonymous bloggers have the ability to demonstrate some of the inner frustrations and joys of being a health care professional, and these have been some of the most well read blogs. Flea, a pediatrician, was one of the most popular medical blogs of 2006. The personal stories and good writing made for entertaining and interesting reads. Most early medical blogs started as anonymous and the most visited medical blogs are usually by anonymous people. But the personal stories about interactions with patients started to get some people suspicious of HIPAA and patient's rights, and Flea, in the middle of a malpractice suit, was blogging a lot of what was happening with some of the identifying details removed.

Drew and I have decided to go the non-anonymous route to ensure credibility and responsibility in our open discussions. Now of course as you know that means we still can touch on sensitive and taboo subjects, especially given that death in general is taboo. But hopefully by having our identities known we can establish trust, and maintain a site that will be helpful for years to come.
I know this does not have a lot to do with hospice and palliative care, but it kind of affects Pallimed, so I thought you should all get a chance for some insight into our little piece of the world here.

With all that being said, our good anonymous friend, HospiceGuy has a post about a hospice article from MGH.
And a few other news tidbits:

Kevorkian is likely to be let out of jail on June 1st after serving 8 of his 25 years in a Michigan prison. So get ready for a few news items to pop up and for family, friends, patients, and co-workers to ask your opinion on the whole Kevorkian/euthanasia issue. You heard it hear first!

And philosophy students get "Epi-curious" about why one should not fear death. What do you think some of your patients might say if they read this post?

The makers of Worlds of Warcraft, the engrossing online game, gave a 10-year old boy with metastatic cancer his 'Make-A-Wish', by allowing him to create a character in the online world. They also let him make his dog into a charcter, pictured below. That is pretty cool. (Thanks to Kevin MD for the link.)
(First Photo courtesy of flickr.com user june c oka)
(Second Photo courtesy of Blizzard via ocregister.com)

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Jessica Israel, the chief of geriatrics and palliative medicine at Monmouth Medical Center (Long Branch, N.J.), wrote a great article in the NY Times describing the hard work palliative medicine professionals do.

It is very well written. (Hey we are not always critical here!)

Some of my favorite quotes are:

I knew I had an agenda that night, and I needed to establish trust, to bear witness and not to be thrown out of the room. These three things are always on my mind as a palliative medicine physician.

They cannot be stressed enough as some of the key things that we do. For any hard conversation we have, it is made much easier if we have established trust. It takes time and compassion to establish trust, and it can be lost so quickly. Trust allows us to go to that hard place in life where we go from 'Hi' to 'I'm sorry you are dying.' in 10 minutes. (And then spend then next 90 minutes dealing with the cold reality of life and illness.)

The next one:

One of Madeline’s friends asked me what kind of doctor I was.

“I’m a palliative care doctor,” I replied.

“What is that?”

Madeline answered her, “You don’t want to know.”

We have such trouble defining our profession, but this somehow sums it up even though this is often how we may be introduced, though building trust we can gain respect and appreciation for the support we can bring to the situation.

And the last one:

It (preparing for transplant) was a flurry of phone calls, an excitement that I guess goes along with saving lives. I remember thinking to myself, This is too loud. We need to keep our voices down. This is their last night.

Life is too loud. Hospitals are too loud. Even the hospice house I work at can sometimes get too loud. Ask the nurses, they will tell you I hush them all the time. Peace and quiet takes a lot of hard work, because we are all struggling to have our voices heard in this fast scary world. When it is truly quiet and calm, that can be a great accomplishment. When you are alone in your thoughts when someone you love is dying and all you can hear is the chatter and life at the staff station, I can't imagine that is soothing.

Sorry for the two quick posts, but I still have to catch up to Drew's relentless posting!

Thanks to DB's Medical Rants for the heads up.
Image by Python Tifenn, from NYT

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1) Nature published a study out of Brown demonstrating the persistent effects of morphine in the brains of mice. Reading the study (quite dense on the receptor type stuff) they basically found that morphine inhibits long term potentiation of GABA mediated synaptic transmission. In a press release they describe it as this:

So the net effect of morphine and other opioids, Kauer found, is that they boost the brain’s reward response. “It’s as if a brake were removed and dopamine cells start firing,” she explained. “That activity, combined with other brain changes caused by the drugs, could increase vulnerability to addiction. The brain may, in fact, be learning to crave drugs.” (emphasis mine)

This is important research to figure out the chemical signaling that may contribute to addiction and may help us prevent addiction in the future. But the press release from Brown has some pretty sensational claims, like the one above, and the one that really caught me off guard:

“The persistence of the effect was stunning,” Kauer said. “This is your brain on drugs.” (emphasis mine)

Now these quotes were not in the research study, but they were picked up by the medical media and the mainstream media. How is that, you may ask? Did they all interview the researchers?

Here are some quotes and links from some news sources:

The Journal of Young Investigators has probably the best and most original articles on this research.

Scitizen starts the article with a common fear of opioids:

The power of morphine, indeed any opiates in pain management is invaluable yet dangerous. Opiates are the primary pain killer in a medical toolkit; few chemicals can come close to their effectiveness in subduing pain. I stopped taking morphine after several days but a substance abuser still keeps self-administering opiates because the drug makes him or her feel so good.

Science Daily here with a review that looks a lot like the press release.

Some of you may not realize that a lot of the news you read was never written by a responsible unbiased journalist. But in fact the news article you read is a just a rehasing or direct copy of a press release. (Brown press release here) In this case many of the articles reporting on this basically take the press release and rearrange things a bit, but in essence take the whole press release as it is. I can bet you few of the news sources read the article. The article is technically very difficult and I will admit, I had much trouble trying to wrap my head around sentences like this, and I was almost on Jeopardy once. (That is a story for another time.)

So in conclusion, beware press reports of articles that they likely have never read/understood, and lets keep researching to figure out more about this issue before we make amazing claims about human behavior from a few slices of rat brain.

2) A daughter blogs about being present as her father dies. It is nice to get these uncensored insights to the viewpoint of the family caregivers. One tip for those who read the post: to pronounce a patient deceased, you do not have to test their corneal reflex with gauze as the nurse did in this story. Checking for heart rate and respiratory rate in an expected death is appropriate enough.

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**I just republished this post because for some reason it wouldn't allow readers to comment. Email me directly if that is still the case. --Drew**

Happy belated Nurses’ Week for all of the nurses who follow the blog and those who love - or at least professionally admire - them. I am traveling through next week and this may be my last post until the last week of May. And yes, the fonts on this post are a little off - I can't figure out how to fix it.

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1)
If you haven't heard already, several top executives for Purdue Pharma have plead guilty to criminal charges from misleading doctors about the safety of OxyContin. NY Times has a pretty good story about it here. Some of the article's rhetoric is a little off - "OxyContin is a pure, high-strength version of a long-used narcotic, oxycodone," and suggests there is something uniquely sinister about OxyContin. There isn't, except in the way it was promoted, and I'm glad there will be some accountability for it.

2)
The American Journal of Medicine has published a prognostic model for predicting 1-year mortality in hospitalized adults. Specifically it used prospectively gathered data from a single institution and looked at adults over 65 years, admitted to a general medical ward, who survived to discharge (~3000 patients each in the derivation and validation cohort). Administrative claims data was used (ICD-9 codes). Mean age was 78 years; 80% of the subjects were African American. The researchers created a prognostic scoring system to predict 1 year mortality by assigning points to various conditions that were associated with 1 year mortality in multivariate analyses: age, non-home discharge, chf, pvd, dementia, renal disease, cancer. Those in the highest point category had a 46% mortality in the derivation and 42% morality in the validation cohorts. Essentially the scoring system is a way of identifying those patients with a 'decent' chance of dying within a year, and might be useful as a way of, for instance, in a health care system, flagging those patients for special attention towards advance care planning, goals of care discussions, etc. A major problem with this is that it is derived from a single institution in the US (University of Chicago) whose patient population (largely African American) is well known to generally have worse health outcomes than the population as a whole. One would want to see the scoring system validated in other centers before generalizing it further.

3)
Two cancer journals have had special issues:
Journal of Clinical Oncology's latest issue is on geriatric oncology. Many articles, none of which I read other than the introductory ones. There doesn't seem to be any article addressing an issue of great interest to me: cancer therapy for the cognitively impaired, but oh well.

Annals of Oncology has published a supplemental issue of consensus guidelines from the European Society for Medical Oncology which includes a few supportive cancer guidelines (including chemotherapy induced nausea/vomiting and the management of cancer pain). They are pretty basic and short. The cancer pain one bravely offers a morphine:methadone conversion ratio which is pretty reasonable\conservative: 12:1 for morphine doses >300mg.

4)
Chest has a lovely piece about the "dying" art of the condolence letter, arguing that these should be a standard of practice for all physicians. It has practical recommendations for language, etc. It includes this condolence note written by Abraham Lincoln to a family member of a civil war soldier:

"It is with deep grief that I learn of the death of your kind and brave Father; and especially that it is affecting your young heart beyond what is common in such cases. In this sad world of ours, sorrow comes to all; and, to the young it comes with bitterest agony, because it takes them unawares. The older have learned ever to expect it."

As lovely as that is I can't imagine ever writing anything like that to a family member.

5)
And, finally, Pain has e-published a long, detailed, cogent review article about opioid dependence and abuse in chronic pain patients. It covers everything from history, terminology (and all its confusing problems), genetics, psychiatric comorbidities, and current major and unresolved controversies in opioids and chronic pain (what percentage of patients have abuse problems, how do you tell, is it iatrogenic, what do we we do about it, etc. etc.). No answers here - because there are none - but a wonderfully detailed review of the field.

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The New England Journal of Medicine published an update (usually every 5 years) on the practice of physician-assisted death (used here to describe euthanasia (E) and physician-assisted suicide(PAS)) under the legal Netherlands Euthanasia Law (2002). There have been previously published articles in NEJM reviewing acts of hastened death in 1990, 1995, 2001, and this one covers 2005. This is the first study published covering the practice after the legalization of a previously illegal but accepted acts of euthanasia and physician-assisted suicide. One of the major additions is the authors also investigated the frequency of palliative sedation, which had previously been omitted for unclear reasons. The study stayed true to the methods of previous studies by reviewing death certificates and sending surveys to physicians (with a very impressive 78% response rate!)

This is an article that I would classify as myth-busting as a few of the major arguments against E/PAS are undermined.

1) No slippery slope. A major finding was the absence of the 'slippery slope' that many fear may come with the public/legal acceptance of physician-assisted death. The percentage of deaths attributed to physician-assisted suicide (0.1% in 2005, 0.2% in 2001) and euthanasia (1.7% in 2005, 2.5% in 2001) both decreased (statistically significant). Palliative sedation accounted for 8.2% of the deaths, but there was no comparison to the years before. Obviously the argument that E/PAS is wrong even if there is one hastened death still holds up pretty well if there are are 2 or 200 hastened deaths.

2) Less evidence of hastened death without explicit request. One of the major safeguards against the slippery slope and hastened death of those who society may no longer find 'useful' is to ensure that E/PAS is voluntary/autonomous and without coercion. One of the great fears of legalization of E/PAS is a situation like in Nazi Germany where a policy of ending 'lives not worth living' (i.e. disabled, mentally incapacitated) was tolerated. This study demonstrated this happened less in 2005 (0.4%), and most times the physician spoke with the patient about this at an earlier time, or with the family, and often times with another physician.

3) Opioids are not the medications of choice for hastening death. The great (public and medical) fear that titration of opioids for symptoms may hasten death is undermined by the fact that those who practice E/PAS in the Netherlands use medications such as neuromuscular relaxants more often than opiates. As I have been teaching students and residents lately: Opioids are powerful palliative medications to be understood and respected, not feared.

Now this is not to say there are not very strong and cogent reasons against E/PAS, but in any reasonable debate about these practices we must reference the data correctly so that our arguments either way are sound.

There is a well-written editorial by Timothy Quill, who is often called on to comment on this topic in NEJM and JAMA. He is a superb writer and his editorial makes for a good review on the subject. He does make note of the AAHPM's revised position statement of 'studied neutrality' on physician-assisted death. I am a little frustrated that the term physician-assisted death is becoming more common (AAHPM, and Oregon DWD report) because to me this term encompasses both euthanasia and physician-assisted suicide, but some use PAD to mean one or the other or both. Here is my logical understanding of this:

All euthanasia is PAD.
All PAS is PAD.
PAD includes PAS and E.
E and PAS are ethically distinct acts because there is a different 'actor' in each.

So therefore to use the term PAD is more confusing because one still has to clarify if you mean E, PAS or both.

Also, if anyone is going to be at the Nashville AAHPM Current Concepts Course, I am leading the session on Prognosis Saturday AM, feel free to say hi.

Anyway, here is my disclaimer:

(My Standard Disclaimer: Pallimed, Dr. Sinclair and his current and former employers and states do not endorse or practice euthanasia or physician-assisted suicide, but do encourage the open, non-judgmental discussion of these topics for educational and ethical discourse about this controversial area of medicine.)

Photo courtesy of flickr.com user IrenaS

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1) This last Monday I gave a talk to our palliative medicine fellowship program about topical and transdermal medication in palliative care. While I am generally not a big fan of topical/compounded medications (because of a general lack of efficacy research or basic science studies for many), I did come across a case series of 4 patients who received topical methadone for open wound pain management. I have worked with morphine gel before with mixed success, but never tried a different opioid. In 2005, Romayne Gallagher, MD, CCFP and colleagues mixed methadone and Stomadhesive powder and sprinkled it in the wound. 3 patients had dementia, and the patients could not use pain scales, so the staff rated their pain. (Obviously a weak part of the study) Now this was not successful in all cases which I give credit to the authors for admitting/publishing the 'negative' findings, as this is as important as positive 'findings' in research. But it may be something to try (and publish) for patients with bad wound pain and too much sedation from systemic opioids. If any of our readers have had luck with topical opioids feel free to post in the comments.

While we are on the topical/transdermal issue, I have one key point to make that is often confused....

• Topical medications have a local effect without significant systemic absorption
• Transdermal medications are systemic by nature of their absorption into the blood stream and effect at a location separate from the location of application

For example, scopolamine is transdermal (systemic), but the instructions (for no clear reason) state you must apply it to the retro-auricular area. Marketing, placebo effect (it is near your 'balance centers in your ear')? I am not sure. I wouldn't change your practices on this fact, because everyone is going to look behind the ear for the Scop patch not on their lower back if you put it there to prove my point.

2)PRI's The World had a 5 minute radio spot on hospice acceptance in Hispanic communities last week. They quoted some NHPCO statistics from 2005 noting 14% of the US population was Hispanic but only 4% of hospice patients. They do a good media review of the components of hospice, and the barriers to accessing hospice within the Hispanic community.