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As I mentioned in a recent post I have accumulated a large back-log of articles to discuss, and so am going to do a few weeks worth of quick-n-dirty article commentaries to catch up.

And so here it is, the 2nd Annual Palllimed Autumn Mag Citrate Bonanza (in reverse chronological order going down my pile):

1)
Medical Decision Making has a study exploring patients wanting chemotherapy and hospice at the same time. It is reminiscent of research we discussed here. This study is based on a survey of smokers (not actual lung cancer patients, and who had a median age of 34 years) and asks them a series of hypothetical questions (essentially if you had incurable lung cancer, and these were the options presented to you, which would you prefer). They were given accurate, albeit simplistic, descriptions of ‘supportive care,’ chemotherapy, hospice care, and hypothetical combinations of those. Basically most subjects responded that they’d prefer chemotherapy and hospice at the same time. This should not be surprising since essentially what they were choosing in this research was 'The Most Care/Win Win' option (treatments to prolong their life, to attenuate chemo side effects and cancer symptoms, and added practical/emotional/spiritual support to boot). Sounds pretty good when the alternatives were not having one of those benefits, and I’m not sure extrapolating from this young/healthy population’s choice of More Help over Less Help particularly adds anything to our understanding of barriers to hospice care.

Which is not to say they’re wrong: having to forswear chemotherapy is a barrier, but a complicated one, and doesn’t answer the question as to whether we want hospice per se to be able to do everything for those with short prognoses (see related post link above). That is, I think part of this research seems to be rooted in the idea that as a society/medical system if someone has a short prognosis (less than 6 months) they should be in hospice and it's a major problem that so many aren't. I'm personally not sure that this is the case (hospice is underutilized, majorly, to be sure) - they should be offered hospice, they should be receiving superb palliative care (whether or not from a palliative specialist), and they should not be offered ineffective, burdensome treatments: 'The Problem' is that patients aren't getting this anywhere nearly as often/much as they should be. This is different from them 'needing' hospice, and that the 'fix' is just getting these patients into hospice. If we advocate for a system in which patients can receive ineffective, burdensome treatments plus hospice care to soften the blow - we aren't doing anyone a big favor.

(Thanks to Dr. David Weissman for alerting me to this article.)

2)
NEJM has a tidy review of renal failure in cirrhosis. It discusses, generally, its pathophysiology and treatment, and the role of liver and kidney transplantation in its management. While not - at all - palliative oriented, it does touch on prognosis, as well as provides a concise summary of the approach to this highly mortal situation that is not uncommonly seen by palliative clinicians at hospitals which manage these patients (ie – a nice brush-up article for the teaching file). The prognosis data are dismal: this article argues for a 50% 1 month and 20% 6 month survival for patients with cirrhosis and renal failure (without transplant). Yikes.

3)
On the social media & medicine side of things, JAMA just published a survey of medical school deans asking about concerns/history with inappropriate content posting to social media sites by medical students. It seems it is indeed an emerging problem. While a lot of the problem seems to be students whining and revealing themselves in undignified situations (drunk/suggestive party shots, etc.), there were also problems with posting confidential patient material (an issue more of a concern to medical bloggers and why we have tried to be very strict about this on our blog). Most of the reports to deans about this were from within the medical school (staff, other med students, etc.) and only 4% were from patients/families themselves.

4)
Social Sciences & Medicine has a qualitative study using grounded theory about the desire for hastened death (DHD) – based on extensive 1 on 1 interviews with 27 adults with advanced cancer at a cancer center in Toronto, all of whom endorsed some contemplation of a wish for a hastened death. These were sick patients – 70% died during the course of the study. The themes that emerged are consistent with what I think many of us who work with dying patients hear frequently. They found that DHD clustered around 3 themes: a hypothetical exit strategy if things get rough; an expression of despair, and a more peaceful-or-at-least-resigned, ‘letting go’ meaning. None of these themes and the quotes they give really are consistent with suicidality – these patients who expressed, at times, DHD, were not suicidal, at least in the way we usually think about suicide (that is – really/truly wanting to be dead; instead the patients wanted to feel better or, as they resigned themselves to the inevitable, had times when they wondered to themselves that given this was actually going to happen anyway why wait around).

It’s a fascinating read, if nothing for the quotes from patients and to hear what they go through (and the things that others put them through):

“I've experienced such incredible pain over the last little while and more in the last week. Such incredible pain that it made me think that death is preferable to this…I'll sit there for 2 hours in terrible pain. Such pain where I can't yawn even, and I get only half a yawn and my whole insides turn and waiting for the medication to start to work…I'd love to have 48 hours let's say, I'd love to have this weekend where I could plan to have a nice weekend and have no pain. I'd love to do that and it doesn't happen, and the pain affects everything. It makes you tired. It affects how you can eat. It affects your mood. It affects other people, and the fact is that even if you try to hide it, you can't… So that's hard…and I know it's gonna get worse, so that's hard too. It's great to be alive, and pain takes that life out of you, and to sit there for 2 hours with a blanket around you just shivering, with no solution, is really hard.”

“I find it difficult. The two extremes, where the people who tell me that I'm not going to die because God is good, and that God will save me in a miracle, and I say ‘God is good and sometimes He will save people in miracles. But if it was something that would happen to me – it would have happened already. So we have to accept the fact that there is no miracle here…that my time is over.’ And I also find it very hard, the other side, where I ‘love’ the people who constantly say there's nothing wrong with me, everything will be fine, because there is something wrong with me and everything will not be fine."

5)
PLoS Medicine has a study about ‘prolonged grief disorder’ (aka ‘complicated grief’) which tries to validate proposed diagnostic criteria for PGD for the DSM V. The data come from the Yale Bereavement Study (which also generated this controversial and misunderstood JAMA paper about the stages of grief) and involved interviewing bereaved adults (~300, mean age 61 years, interviewed on average 6, 11, and 20-months post-loss).

This is a complicated, statistics-heavy paper (involving how they developed and validated the diagnostic criteria for PGD based on their data set) and I’ll freely admit it broke my brain reading it; this is to say that I can’t comment personally about how persuasive, or not, their proposed criteria are (an accompanying editorial is supportive however of the findings). It's a revealing insight for the uninitiated into how these new diagnoses get established.

The proposed criteria call for diagnosing PGD after 6 months post-loss, and the symptom criteria (you can read in the paper – Table 3) include yearning and the following other symptoms (and in usual DSM style, noting that these cause significant impairments, are not better explained by another disorder, etc. etc.).

1. Confusion about one’s role in life or diminished sense of self (i.e., feeling that a part of oneself has died).
2. Difficulty accepting the loss.
3. Avoidance of reminders of the reality of the loss.
4. Inability to trust others since the loss.
5. Bitterness or anger related to the loss.
6. Difficulty moving on with life (e.g., making new friends, pursuing interests).
7. Numbness (absence of emotion) since the loss.
8. Feeling that life is unfulfilling, empty, or meaningless since the loss.
9. Feeling stunned, dazed or shocked by the loss.
   

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Thank goodness I get The Pain Medicine News.  I used to think of it as a throwaway industry newspaper but lately it has been a great source of information about the FDA's plans toward the future of opioid prescribing and the Risk Evaluation and Mitigation Strategy (REMS) plans that are coming down the pipeline.  This week's issue discusses the Pain Medicine communities trepidation towards the REMS for Onsolis. (article behind membership wall)

Some background first: If you have not heard about Onsolis yet, it is a film containing fentanyl applied to the buccal (inside cheek) surface to dissolve for immediate pain relief.  If you are thinking "Haven't I heard of something like that before?" you may be recalling it with:

Fentora - Fentanyl buccal tablet made by Cephalon
Actiq - Oral transmucosal fentanyl citrate (on a stick but don't call it a lollipop!) made by Cephalon

Onsolis is made by BDSI and in the Summer of 2009 received FDA approval.  And it got a parting gift from the FDA, the first opioid to be subject to REMS.  I won't spend this post talking about the relative merits or risks of prescribing Onsolis but instead will focus on the REMS as it has a huge potential to affect good pain relief.

So here is the REMS process for Onsolis called FOCUS:

• Each patient, prescriber, distributor, and pharmacy enrolls in FOCUS
• Prescriber faxes the initial prescription information to FOCUS
• Prescriber sends the original, hardcopy prescription to a FOCUS pharmacy via courier using the supplied shipping label
• Patient receives a counseling call
  
• While the hardcopy prescription is in transit the FOCUS pharmacy confirms that the patient and prescriber are active in the FOCUS Program database, the patient counseling call has been successfully completed and schedules Onsolis delivery to the patient.
• Upon receipt of the original, hardcopy prescription, the FOCUS pharmacy dispenses Onsolis and delivers the medication directly to the patient via a secure, traceable courier (with adult signature required) (Apparently within 24 hours, and at most 5 business days)
  

So we can now add bureaucracy to the possible barriers to prescribing opioids.  I am not sure how these steps reduce any risk with opioids with overdose and diversion being the two big ones I would assume the FDA is trying to reduce.  I think the goal is laudable and one I think the hospice and palliative care community has not given the full attention I think it deserves, but the method to me just seems to add red tape without effect.  Has the FDA tested this in opioids in a RCT to see if it reduces any risks?  It would be nice to see an evidence based approach to this important problem.  Thank goodness the law that gave the FDA this power also stipulates review of the REMS program for each drug at 18 months, 3 years and 7 years.

But if the FDA trials it with one drug, I doubt anyone is going to prescribe it when there are viable non-REMS options for immediate relief pain control.  The Pain Medicine News article quotes BDSI staff diminishing the REMS effect on sales, but I think the REMS provide a really tough barrier to prescribing unless you have really run out of other options.  The American Pain Society president wrote the FDA a letter stating they were "surprised and disappointed" the Onsolis REMS were "in stark contrast to many of the stakeholder suggestions made."  The article also highlighted the special needs of the hospice and palliative medicine community although I do not know if anyone in our community was directly involved in any of these discussions.


The FDA has a pretty detailed FAQ on the Onsolis FOCUS REMS program here.  The FDA does not expect the Onsolis REMS will be the REMS for long acting opioids. Here is a list of opioids they expect to fall under REMS in the future.  The InVivo Blog has some more info on the FDA's strategy towards REMS.  And here is BDSI's slide deck about Onsolis which I may tease apart more in the future.

And the cost of the medication is unknown at this time.  I knew you were thinking that.  Are you planning on enrolling in the FOCUS program?  I will ask to enroll if only to tell you all about it.

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Pallimed will be the host for Grand Rounds the weekly round up of the entire medical blogosphere.  Just as a clarification this Grand Rounds is not the same as Palliative Care Grand Rounds, which is published monthly and focuses on a slightly more specific area. (And is really a swell blog carnival if you have not read it!) 

The topic for Pallimed's edition of Grand Rounds will be the 'Art of Medicine/Nursing' which may be interpreted as you like, kind of like art.

So if you read any great blog posts please email me at ctsinclair@gmail.com with "Grand Rounds" in the subject header and if you would be so kind to add the following:

URL:
Author:
Why this highlights the "Art of Medicine/Nursing":

Special consideration will be given to those who submit blog posts that are not their own blog post.  And fair warning I won't be posting every single link that is sent to avoid an endless post of links.

Looking forward to seeing your submissions!

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I am looking forward to seeing AAHPM President Gail Austin Cooney in Chicago this week to give her a pat on the back for all of her recent publications in high profile media publications.  I think this demonstrates an important function of the AAHPM leadership to engage the public in conversations about palliative medicine and hospice.

This weekend she blogged at The Huffington Post about how the health care reform debate twisted counseling patients about advanced care planning into something more sinister.  She also wrote a Letter to the Editor in the New York Times in August regarding the Palliative Care series.  She was recently interviewed on an internet radio show.  And she is one of the more active hospice and palliative care docs on Twitter (@gcooneymd).  I just wanted to highlight what a great job she is doing.

If you see any other opportunities for Gail or the AAHPM to make an impact email Gail or let me know and I will pass it on at the upcoming board meeting.

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We don't typically endorse products, webinars, conferences, job listings or much of anything else here at Pallimed, but when we do know about a resource that can impact your everyday palliative care work we want you to know about it.

Such is the case with the Hospice and Palliative Care Formulary USA ($75/$65 for AAHPM members) now being published in the 2nd edition from the founders of PalliativeDrugs.com, Robert Twycross and Andrew Wilcox.  I wanted to write in more detail about why I access this book more often than any other palliative care book since I just ordered 6 of them for the teams I work with.

The first edition was printed in 2006 and my copy is dog-eared from carrying it around, showing it to hospice team members, lending out to fellows, residents, nurse case managers, copying a page for a pharmacist, referencing it for numerous presentations, etc.

Any other medication reference book (nursing or medical) has so many warnings/misinformation about the medications we commonly prescribe and administer in palliative care settings that general pharmaceutical reference books are essentially useless.  I often find nurses and physician trainees who read some of those freebie/cheap Nursing/Medical Drug Guides begin to contradict basic palliative care understanding.

For some poor examples from referencing other drug guides...

"We can't give more than 5mg of morphine...the book says she might have respiratory depression."
"Octreotide? I don't see anything about small bowel obstruction but it does treat a VIPoma."
"Constipation? How about we try more fiber?"

Here is why I find HPCF-USA so useful:

• Detailed palliative care oriented medication information
• Extremely well referenced drug monographs - Awesome for talks
  
• FDA Approved indications clearly listed as well as likely palliative care uses
• Cost information (in actual dollars not some crappy $-$$$$ scale)
• Candid discussion about alternate route dosing/administration for many medications
• Detailed pharmacologic information in tables to compare different meds within a class
• A treatment monograph on 'Oxygen'  - When was the last time you read 4 detailed pages about the ins and outs of oxygen therapy? Wonderful!
• Monographs on related but not primary palliative care meds - A whole section on antifibrinolytic drugs! Bronchodilators! Diabetes meds! Potassium! Magnesium!  You get the point.
  
• Super helpful chapters covering meds in a meta-approach - Opioids and Fitness to Drive; Continuous Subcutaneous Infusions; Drugs Administered via Enteral Tubes
• Designed for use in the USA (as opposed to the UK version with UK only meds like diamorphine)

Here are the things I wish were included/changed/fixed:

• Better binding - it seems to be fragile after a lot of use, and my book gets used
• Not much info on fentanyl IV compared to transdermal and buccal routes
• The 2nd edition cover is a little boring compared to the Red, White and Poppy motif on the 1st edition.
  

If you are an AAHPM member you can get a 20% discount via the AAHPM website.  Also you could access it online via PalliativeDrugs.com but I find the book very useful and a rapid access to have at my desk.  And now with the extra copies I purchased it will be at almost all of my clinical sites.

Do you use HPCF-USA?  Tell me what you like best about it.

Disclaimer: No kickbacks given to any Pallimed author because of this post.  We did give away a HPCF-USA free edition back in 2007 for our winter contest.  And it was pretty cool when I met Robert Twycross in Austin and he recognized my name from Pallimed and told me he was a big fan of Pallimed.  But that is not why I wrote this.  Obviously I think this is a super awesome book.

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I am traveling to Chicago next week to attend the AAHPM Fall Board Meeting and I wanted to take this opportunity to hear from the Pallimed community if there are any issues you would like voiced at the meeting.  Just trying to do my part in transparency and access so the community represented by the Board of Directors is heard. 

I always knew I could email anyone on the board but it felt intimidating if I did not know them well.  So here is your open invitation, we may not know each other well, but if you read Pallimed you probably know me well enough.  I probably would not have been elected to the board without support from Pallimed readers so if there are any issues/concerns/praise/comments you would like discussed at a higher administrative level I will be willing to listen and pass it on.

You can always email me if you would like it to be private/confidential at ctsinclair@gmail.com or you may want to consider posting it as a comment on this post so the community can also chime in and give supporting or opposing views.

AAHPM Election
Also, just a reminder to all members of the AAHPM that it is election season and you should have received your ballots if you are a full-dues paying member. They must be post-marked October 2nd.  Here is the pdf of the profiles of the candidates.  (Behind membership wall)

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We don't do a lot of first person narrative commenting here at Pallimed so I wanted to direct you to two fantastic pieces from the previous week.


GeriPal contributor Anne Johnson is a social worker who works with geriatric and palliative care teams (and in fact identifies herself as a GeriPal SW - a first?) who unfortunately had a very difficult time navigating the system to get a palliative care consult for her 93 year old father-in-law.


A couple of quotes to get you interested so you can finish the whole story at GeriPal:

"In other words, I wanted a "goals of care discussion." And that's why I was leaning over the gurney in the ER and shouting (because he's deaf), Joe, do you want to focus on being comfortable? No, he said, I want to wear pants. I took that as a metaphor. I was going to make this hospitalization different."

"I gave him a couple bites of a forbidden scone and jumped guiltily when the nurse came in, feeling like I'd snuck in a crack pipe."

Don't forget to read the comments on the piece as well and leave one yourself for Anne.


Also, Dana Jennings has an excellent piece in the New York Times health section today focusing on the pain that one cannot describe.

"If you can tell an E.M.T., a nurse or a doctor where it hurts and how much, that is generally a good sign. But what interests me even more is the pain that can’t be articulated. Fortunately, I’ve experienced this only twice."

The author goes on to discuss the meaning of severe humbling pain that prevents you from communicating and concludes there is no meaning. "It just is." Another good read from the New York Palliative Medicine Times Textbook. (If anyone wants to compile some of the articles based on some of the links here at Pallimed and some further searching, please let us know. It would be great to categorize some of these articles in a more organized fashion.)

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Annals has a review of 'last resort' palliative sedation techniques (this makes two Tim Quill papers in a month in Annals). It begins with an apparently true story of a home hospice patient who was denied 'total sedation' despite refractory symptoms and requesting it (patient had to fire the hospice, and a previous palliative care consultant physician managed deep sedation for him over the phone: crazy).

The paper attempts 3 things: first, it tries to clarify the language used to describe sedating practices at life's end; second, it discusses ethical controversies about sedation; and third, it makes some practical suggestions that palliative sedation should be practiced by organizations only with explicit policies, procedures, and quality control.

The language proposed in the paper are three phrases:

1. Ordinary sedation: attempts to relieve a symptom (e.g. anxiety) without trying to alter a patient's level of consciousness. (I don't know why this then would be called 'sedation' as opposed to, e.g., anxiolysis with a medication which can have a sedating side effect, but that's not really important here.)
2. Proportionate Palliative Sedation (from the article): sedating medications (usually benzodiazepines) are progressively increased alongside other symptom-relieving measures, resulting in increasing levels of sedation during both waking and sleeping hours to help relieve suffering. It is usually initiated in response to otherwise intractable physical suffering in imminently dying patients, as in the case described, for example, or for agitated terminal delirium. The end point is relief of suffering that is acceptable to the patient by using the minimum amount of sedation needed to achieve this goal.
3. Palliative Sedation to Unconsciousness: This is what has variously been known as 'terminal sedation,' 'continuous deep sedation,' etc. Deliberately, pharmacologically, inducing a state of unconsciousness in order to relieve otherwise refractory symptoms, and with a plan of maintaining such a state until the patient dies (usually while withholding life-sustaining treatments otherwise such as artificial hydration/nutrition). They mention that this has been proposed, controversially, for existential suffering.

Fair enough; one might note that PPS and PSU in certain instances may, on the ground, appear identical (ie you rapidly sedate someone to unconsciousness for refractory symptoms), although a clinician's intentions might be different (PPS you are trying to control a symptom and 'happen' to need to use deeply sedating doses of a drug to do so; in PSU you've decided there's no way you can control symptoms otherwise, so you intentionally and from the start attempt to induce a pharmacologic coma).

One can appreciate that, in real life, what starts as PPS 'turns into' PSU in those rare occurances when you realize relief of suffering cannot be obtained without induction of unconsciousness, and that clinicians on the ground often don't spend too much time worrying about whether they are doing PPS or PSU. I also wonder that, with these definitions, and by describing PSU as a last resort practice, which it should be and I think by and large is used this way, one should argue that PSU should only be peformed after a trial of PPS, because how else can we be sure it is a last resort option? Which is another indication that trying to distinguish between these practices on the grounds of initial therapeutic goal (adequate sedation vs. coma) can't entirely account for real clinical practice - I think it's fuzzier. That said, there are times in which PSU is attempted from the get-go; for me it's when I conclude suffering is tremendous and death is very imminent (and I don't have hours or a couple days to tinker - or if I did it would be at the expense of ensuring a peaceful death) and you just go straight for deep sedation. Of course, I'd argue this is absolutely 'proportionate' when the alternative is a scenario when an imminently dying patient spends half their remaining hours suffering just so I can be 100% sure that I'm being 'proportionate.'

Which highlights the element of all this which I think they undersell in this paper: the question of imminence. It's actually barely mentioned, at least in frank terms. While they discuss ethical objections to PSU (as potentially death hastening, such as when artificial nutrition and hydration are withheld), such objections, to me, only have merit (which is not to say one has to agree with them) if one concludes that providing PSU is materially death-hastening (by weeks, months let's say). A declining, advanced cancer patient, bedbound, not taking much PO, who is developing altered mental status - this is someone who has days to maybe a couple weeks to live (generally speaking) - PSU without artificial nutritional support is unlikely to be death hastening, and if so by hours or a day or two. And if one is worried about hours or a day or two in dying cancer patients then we should all be debating about whether we should intubate and ventilate these patients to get them those precious days.

These questions have not been rigorously researched (there have been some preliminary attempts), and certainly would be difficult to study (e.g. prognoses of patients who have PSU performed, etc.). Along these lines the authors note that it's very difficult to tell in the palliative sedation literature what exact practice is being studied, due to the lack of agreed upon definitions of these practices. It's possible the authors don't believe imminence, per se, matters - it's less important than the refractory nature of the symptoms and lack of other options. Fair enough, but not foregrounding the importance of prognosis gives fuel to the fire that PSU is PAS-lite, or otherwise ethically suspicious. We all think in terms of risk-benefits; and the risk of a loss of two days vs 2 months, to me, are different.

Leaving my agenda aside here, the paper also gives important recommendations to all hospice and palliative care groups to establish sedation policies, procedures, checks, and quality control to both ensure the best possible care but to also mitigate potential for abuse or misinterpretation of these practices. I think one could also add we, as a community, should agree upon research definitions of these terms, to improve our ability to actually study sedation practices.

(Image is from an August Annals issue.)

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American Journal of Respiratory and Critical Care Medicine has a paper about the prognostic importance of delirium in ICU patients, and continues the thread of research we've been following recently about delirium and prognosis.

This study was a single-center (Yale) prospective cohort study of older (over 60 years) adults in an ICU, in which delirium was prospectively and rigorously assessed (by research nurses, using the CAM-ICU scale); ~300 consecutive eligible admissions were enrolled. They note that they included patients with 'coma/stupor' as delirious; I initiatlly assumed this implied patients who were spontaneously stuporous/comatose (due to a high grade encephalopathy from sepsis, etc.) as opposed to pharmacologically induced sedation/stupor. However as far as I could tell there were no such exclusions and these data apply to patients with delirium/coma from any cause. They basically looked at the number of days a patient was delirious/altered in the ICU, and correlated that with survival.

Patients (mean age 74 years, 31% with a diagnosis of dementia, 54% intubated, 82% received opioids or benzos in the ICU at some point, median ICU LOS 6 days, meidan hospital LOS 11 days, and median days of ICU delirium was 3). 16% of patients died in the ICU and 50% died by 1 year.

Yes, that's 50% 1 year survival for older patients admitted to an ICU, with or without delirium.

They did a mutlivariable Cox regression analysis and found that number of ICU delirium days were independently associated with shorter survival (hazard ratio); age, comorbidities, and severity of ICU illness were also independently associated with worse survival. Eye-balling median and 1-year survivals based on days of ICU delirium (this is me eye-balling a Kaplan Meier curve): median survival for ICU delirium lasting 5 days or longer was about 2 months with 1 year survival being about 35% for those with delirium 5+ days and 45% for those with 3-4 days. Patients without delirium did much better: 1 year survival was 75% (as far as I can tell the number of patients this represents is not shared).

This is further supporting evidence to the now vast pile of data indicating that delirium in multiple settings is a poor prognostic marker. To take these data at face value, being older, in an ICU, and having alterations in your mental status for more than 4 days implies a 50% 2 month mortality and 2/3 1 year mortality (and any ICU stay implies only a 50% chance of surviving a year). It's important to acknowledge that despite the good quality of the data collection for this type of research - prospective, used a validated assessment tool, all-comers were offered enrollment, etc. - it is still from a single institution and the absolute value of these numbers is not easy to generalize. That said, whether it's 2 months or 4 months or whatever: it's bad, and this study is as good as any recently to show that.

What do we do with this? I have always hummed and hahed about how to apply this sort of research at the bedside. We already know if you're 75 years old, and in an ICU, for any reason - it's a marker of high 1 year mortality. Which is not to say that you're likely to die in the ICU, and that going to an ICU isn't going to 'save you.' Most of these people survived the ICU, although most who had rocky ICU stays died within a few months. That, to me, is the real story - we can save you, but often for a relatively short period of time (and who knows what quality of life). Patients want to live, and be 'saved,' and all that good stuff, but we are doing them a disservice if we don't let them know that while we can 'save them,' and all that good stuff, it's usually not going to be for a long and healthy life. It's time to begin planning, and sorting through how you want to spend that time. A wise mentor once told me when talking about The ICU and older patients is that that the big question is not can this patient survive the ICU (most do and we have incredibly sophisticated systems in place to get people out of ICUs alive) but that can they survive it for what? And for how long? And while most patients want to live, knowing that they might be facing going through that again, and with likely little long-term benefit, many will choose not to do it again.

Anyway - the big etiologic question here, which may have a long term impact on how patients are treated, especially as pain and symptom meds do, indeed, cause/worsen/lengthen delirium, is whether the delirium itself causes the worse prognosis, or whether it's a passive marker of poor prognosis. If it's the delirium itself then anything to prevent or shorten it will make people live longer presumably: that will 1) hopefully be an impetus to actually do large/good trials of delirium treatment (in ICU and anywhere else - we need 'em), 2) raise the spectre of withholding symptom meds in hospitalized patients as they could be perceived as causing/worsening/lenghtening delirium and thus worsening long term prognosis?

(Thanks to Dr. Bob Arnold for alerting me to this.)

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The Annals of Internal Medicine has a perspective article by palliative medicine communication gurus Drs. Tim Quill, Bob Arnold, and Tony Back which details an approach to discussing treatment preferences with patients who want "everything." When I think of a patient requesting "everything," I typically think of it as a response to a physician who offers the patient the choice of "doing nothing" if the patient's heart should stop or the alternative of "doing everything." Of course, patients pick up on this language and make certain assumptions based on the ambiguity and misrepresentation of these statements. If the patient who has been previously exposed to this type of dialogue is approached during a subsequent hospitalization in a more measured manner, they may still say, "do everything," or some may come up with it on their own. But what does "do everything" mean? Does it mean "I'm philosophically and/or religiously inclined to receive any and all life-prolonging measures no matter what type of suffering I'm going through or how I appear to my family, so keep me hooked up to 4 pressors on a ventilator until all my digits are blue and you're all watching the rhythm strip because you can't ausculate my heart sounds" or does it mean "do everything you can to stablize me so I can go home to die there" or something else?

Quill, Arnold, and Back distill their approach to this common scenario into six easily digestible steps, which includes attempting to 1) Understand what "doing everything" means to the patient, 2) Propose a philosophy of treatment, 3) Recommend a plan of treatment, 4) Support emotional responses, 5) Negotiate disagreements, and 6) Use a harm-reduction strategy for continued requests for burdensome treatments that are very unlikely to work.

The appeal of this approach to me is that it fits very well into how physicians think. The most essential part of this process is to refrain from interpreting the patient's request to "do everything" as a blanket consent for any medical therapy available to humankind. Rather, such a request should be considered akin to a clinical sign that requires more investigation. In step 1, the physician develops a "differential diagnosis" regarding the meaning of "everything" which includes potential affective, cognitive, spiritual, and family related factors. Table 2 of the article suggests appropriate questions that help to delineate the "diagnosis" (ie the meaning of "everything"). In this step, the patient's values, priorities, and goals are revealed. The patient knows these better than the physician. What they may not know (and what the physician should assess) is whether potential medical therapies will be consistent with values and priorities or if they will stand a chance to help them meet their goals.

So how do we translate these statements into an actionable plan of care upon which the patient and physician can agree? Step 2 represents the "currency exchange" between patient values/goals into a plan of treatment. They propose five general categories of treatment philosophies of "everything" (one example: "everything that has a reasonable chance of prolonging life, but not if it would increase the patient's suffering"). Based on Step 1, the physican can confirm that the patient agrees with the general philosophy. Once this is done, then the physician can decide which parts of the treatment plan are consistent with the philosophy and propose a strategy to the patient.

Step 4 of supporting emotional responses shouldn't really be a "step" but an infiltrative component that is vital to ensuring that the patient feels well supported (and probably improves the likelihood of success/agreement on the plan, but if agreement isn't reached, proceed to Step 5).

Step 6 describes a "harm-reduction strategy" for responding to requests for burdensome treatments that are unlikely to work (in the context of a "patient philosophy" of vitalism). Repeated badgering of the patient/family to reconsider DNR is discouraged in favor of keeping the patient a full code and considering a short code (but not a slow code).

The article is a quick read and it's an instant "teaching file" classic. Here are some questions to serve as discussion points (ie I want comments):

1. In the first few paragraphs, it's inferred that a patient request to "do everything" should prompt the physician to initiate the six step process (in addition to providing the patient adequate information about their illness and prognosis). Do you use techniques to avoid the "do everything" request altogether? If so, what are they?
   
2. How do you think patients respond to physician statements regarding treatment philosophies (see Table 1)? How stable do you think these philosophies are?
3. What do you think of the harm-reduction strategy? How does it fit into your hospital's futility policy (if your hospital has one)? Is a "short code" more ethically appropriate than a "slow code"?

If you liked this article, then you'll love "Mastering Communication with Seriously Ill Patients: Balancing Honesty with Empathy and Hope," by Back, Arnold, and James Tulsky (which should be mandatory reading for all clinicians in palliative care and is great for other clinicians as well).

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Palliative care and hospice programs memorialize their patients in many different ways. I'd like to draw attention to a unique memorial ongoing through my home institution, Wishard Health Services in Indianapolis. My mentor and colleague Dr. Greg Gramelspacher will pedal a bicycle across the United States to commemorate the 10 year anniversary of the palliative care program at Wishard and to remember the over 3300 patients for whom the program has provided care during that time. The journey begins today, September 14, in Santa Barbara, CA, and will conclude October 24 in Charleston, SC. Each day, Greg will carry a list of 80 people to whom his ride that day will be dedicated.

Wishard is a city-county hospital that focuses on serving the vulnerable population of Marion County and serves as the flagship site for palliative care educational efforts at Indiana University School of Medicine. The day to day struggles that many of our patients face often humble our team. Dr. Gramelspacher tells the story of a patient who told him, "that's only the fifth really bad thing that has happened to me this week," when he was told that he his cancer had metastasized.

KLX Media has provided wonderful support in developing a Social Media strategy to help spread the word of this event. The Ride To Remember (R2R) Blog will include updates from his trip, a list of patient names for each day, and stories/poems/remembrances written by team members and others about patients who have touched the Wishard Palliative Care Team. (See the first story about Mr. Suri and his son, Perminder.) You can follow R2R on Twitter and Facebook and follow updates of the blog through RSS, if you wish. Greg will also stop every 20 miles to send a telegraph to you if you want (kidding).

I invite you to drop in on any of these internet venues and leave a note.

See Greg discuss R2R below:

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Well, summer's over, Congress is back in session, the President is talking health care reform tonight, and I feel like some mundane posts on journal articles. I have developed an impressive backlog of things to blog about during my real-life and then blog-only vacation the last few weeks, and it may soon be time for the fall Mag Citrate session, we'll see.

JAMA recently published a trial of a palliative care intervention for advanced cancer patients. It was called the Project Enable II and was a RCT of advanced cancer patients (n=330 which was a 47% participation rate, mean age 65 years and mean Karnofsky 77%, all patients were at two academic centers in Vermont, all within 12 weeks of diagnosis of an advanced solid tumor malignancy - they said with a diagnosis of approximately 1 year although it's unclear how this was determined). They were randomized to either usual care (including ad hoc palliative care referrals, etc.) or a palliative care case management/patient education package, and were followed over time.

The intervention is complex and tough to summarize: it involved telephone symptom assessment, education, counseling, and care coordination (e.g. organizating appropriate referrals) for these patients by a nurse practitioner. There was a heavy self-problem solving element as well (see here - the Charting Your Course handbook halfway down for more details). Phone calls were monthly and lasted 30-40 minutes.

Health related quality of life (via FACIT-Pal) and mood were modestly improved in the intervention group compared to control. Survival (14 vs 8.5 months) and global symptom burden were improved in the treatment group as well - not-statistically significantly however despite the marked difference in median survival. They reported no differences in resource use (days in hospital, ED visits etc.) between groups; rates of enrollment and length of stay in hospice weren't reported.

A few things of note:

• The trial is important as it represents a trial of early palliative care involvement (from the time of diagnosis, or nearly) - it tries to exemplify the 'concurrent care' model most of us have been trying to move towards a long time now (as opposed to the 'I've got nothing left to offer you' hand-off to palliative care model). And it's gratifying to note that this model provided some modest benefits, and while it will surprise no one who practices palliative care that survival was similar, if not improved with the palliative care intervention, it's been the sort of month in which any non-threatening news about palliative care is welcome (and this is about as non-threatening as it comes; 'we' make people feel better with no impact on anything else including resource utilization). These are the sort of findings which kind of make you want to be a wee bit threatening.
  
• But is this palliative care? On the one hand, sure, and it sounds like a worthwhile project which improved the lives of those patients who received it. But this is very different from 'palliative care' as it's actually practiced, in the US, in cancer centers and hospitals (which involves, you know, clinicians seeing patients). The intervention package, as described, is complex and comprehensive enough to make generalization of it (other than if one were to enact the project wholesale) impossible. One also wonders if this falls into the grand, and rapidly expanding category of 'studies which show people feel better if you call them frequently and talk with them about what they're struggling with' (cf here).
  
• And so - why JAMA? This is not to denigrate the importance of the paper and study - certainly any well done randomized controlled trial that has anything to do with palliative care is of note for those in the field, but for a general audience? I've been puzzling over this one for a while, as it's been a long time since JAMA published some original palliative-centric research (CWCS is the last I can recall), and certainly a lot of the palliative research that's been put out in Archives the last year would be of equal interest to a general audience (here, here)? And while my lack of imagination should never be assumed to be anything more than that, it's tough for me to see the interest of this for a general audience? PC doesn't do much? PC improves QOL? PC doesn't affect survival? PC doesn't effect resource utilization? An abiding interest amongst the JAMA editors in patient problem solving/self-empowerment interventions?
  

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Mayo Clinic Proceedings recently had a theme issue on opioids - all available in free full-text.

1)
First, and most practically, it has an excellent review of opioid metabolism (free full-text available). It's both detailed and readable, and one of the most useful single items I've ever read on this topic - and at the perfect level for the HPM fellow teaching file.

2)
Steven Passik has a review article on long-term opioid use for chronic pain - focusing particularly on aberrant drug use (different types of, screening and identifying, responses to, etc.). It's directed at general practitioners and very specifically tries to address all the different flavors of 'aberrant use': simple ignorant misuse, pseudoaddiction/undertreated pain, chemical coping, diversion, frank addiction, etc. and very much keeps the discussion reality-based: patients need pain relief, some benefit from opioids, for those patients with 'red flags' it can be extremely challenging to figure out what is actually happening. The paper is actually refreshing in its mundane discussion of opioid use for chronic pain - no hand-wringing about whether opioids are Good or Bad - just a dispassionate discussion of a mundane (insofar as commonplace) clinical problem.

3)
There's an article which reviews the literature comparing short acting with long acting opioids for chronic non-malignant pain. Summary: no clear benefit of one over the other (regarding analgesia, side effects). Not a huge surprise - the paper does have some academic interest for the wonkish in looking at the question.

4)
Finally, a review on physicians and chemical dependency - particularly focused on anesthesiologists and others with easy access to opioids and other abusable drugs (accompanying editorial here), which made me wonder if this could be a problem for physicians in hospice settings, where access to such agents is a little freer (compared to a hospital ward or outpatient clinic)?

Anyway - I thought this sentence would be appreciated by the spouses and co-workers of doctors everywhere:

'The intellect that physicians rely on to learn their craft allows them to develop exceptional rationalization, denial, and resistance techniques.'

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Thanks for all the feedback on the 'Why You Should Comment' post.  It was good to hear from those of you who have had trouble commenting or finding comments for the posts.

You may notice on the bottom of each post (for email and RSS subscribers) a new link that will say either 'Post a Comment' or '# comments' with a # indicating how many other people have commented on the post.  Of course you can always find the comments on the web page on the bottom of each post or the most 5 recent comments in the right hand column.  RSS subscribers can also subscribe to comments if they like.

If you click on this link it takes you to the post and the comment box so you can have your say too.

A few other comments I heard concerned the barriers to making a comment once you already have figured out where to find the comments. A few points:

• You can post anonymously and many people do.
• You DO NOT NEED a Google/Gmail account to comment.  It is merely a choice.
• The wiggly word (called a CAPTCHA - Completely Automated Public Turing Test To Tell Computers and Humans Apart) is there to reduce spam-bots from commenting and cluttering up the conversation.  It is there to protect us all. 

Let me know if you have any other questions about the technical aspects or problems with Pallimed by email at ctsinclair@gmail.com

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A letter from a group of concerned doctors, including Dr. Peter Hargraeevs, a London-based palliative medicine physician, to the British Telegraph newspaper is raising concerns over the UK's National Health Service (NHS) implementation of a protocol called the Liverpool Care Pathway.  The letter asserts:

Lau F, Maida V, Downing M, Lesperance M, Karlson N, & Kuziemsky C (2009). Use of the Palliative Performance Scale (PPS) for end-of-life prognostication in a palliative medicine consultation service. Journal of pain and symptom management, 37 (6), 965-72 PMID: 19232892

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Montana v. Baxter was argued in front of the Montana Supreme Court this week as a appeal to a lower court ruling that the state constitution does not necessarily prohibit someone from medically hastening their expected death.  With all the concern about hastened death in the news, I figure all Pallimed readers should be up to date.  I won't go into too any more detail on this one other than to say Thaddeus Pope at Medical Futility and Jessica Knapp at The Good Death can tell you all you need to know historically and currently.  No decisions have been made at this point.

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The Huffington Post reports that former Arkansas governor Mike Huckabee thinks that under President Obama's healthcare plan, Senator Edward Kennedy might have been required to forgo disease-directed therapy for his glioma (surgery, chemotherapy, etc), instead being forced to receive only comfort oriented care from the time of diagnosis. Furthermore, he infers that this approach would have resulted in a "quick" death:

"[I]t was President Obama himself who suggested that seniors who don't have as long to live might want to consider just taking a pain pill instead of getting an expensive operation to cure them," said Huckabee. "Yet when Sen. Kennedy was diagnosed with terminal brain cancer at 77, did he give up on life and go home to take pain pills and die? Of course not. He freely did what most of us would do. He choose an expensive operation and painful follow up treatments. He saw his work as vitally important and so he fought for every minute he could stay on this earth doing it. He would be a very fortunate man if his heroic last few months were what future generations remember him most for."

Senator Kennedy's death has been politicized by many on all sides of the healthcare debate. Politics aside, though, anyone in the field of hospice and palliative medicine (and many others) can see the obvious errors in Huckabee's thinking. I hope to add to the internet "chatter" that refutes his claims because I don't think there can be enough chatter on this side of the issue.

Let's assume that Sen. Kennedy's diagnosis was glioblastoma multiforme. While we know that he had a "successful" surgery (unclear how success was defined), I don't know what other therapies he received. But here are some studies related to gliomas:

• In a small randomized trial, patients older than 65 were randomized to receive resection of tumor vs. a biopsy. All subjects received radiation therapy. Median survival in the surgery group was 5.7 months vs. 2.8 months for the biopsy group.
  


• In one randomized trial that looked at the role of adjuvant radiation therapy for older patients (>70 years old) with glioblastoma multiforme, the median survival for patients who received radiotherapy plus supportive care was 29.1 weeks, as compared with 16.9 weeks for patients who received only supportive care. The regimen studied was 50 Gy in 1.8 Gy fractions, in other words, about 28 treatments.
  


• Non-clinical trial data suggests that temozolomide may confer a survival advantage to older patients of a few months on average. It's an oral agent that is taken for five consecutive days every 28 days.
  

In other words, the "average" older person will gain some months with these therapies (perhaps longer for some, and much shorter for others) with the possible adverse effects and inconvenience associated with the therapies. Side stepping any controversy regarding what the standard of care should be, let's assume that these therapies do indeed stand a chance to prolong a patient's life. That's great, although obviously, we're not talking about curative therapies as Huckabee states. Everyone (regardless of age) should have the opportunity to discuss the merits and drawbacks of these therapies in their individual circumstance. None of the proposals, including anything that Obama has mentioned or HR 3200 Section 1233, would preclude a patient (including an older patient) from choosing these therapies. Let's also remember that primary brain tumors are not unique to older patients and let's hope that those who do not qualify for Medicare or Medicaid have adequate insurance coverage to cover these expensive therapies in a timely manner (when they are desired by the patient.)

Huckabee may accurately state that most of us would elect to proceed with at least some of these therapies. The operative word is most, and given the statistics above, a significant proportion might be inclined NOT to proceed with the therapies (as Huckabee quotes Obama as saying although Huckabee's inference is that the "government" would make the choice for the patient). Furthermore, some may not be candidates for the therapies because of comorbdities or advanced stage at diagnosis. The common denominator amongst all patients diagnosed with this is that they will be burdened with symptoms and eventually die from their disease: A population that would be well supported by palliative care. Palliative care should not only be the alternative to disease modifying therapy when the physician obtains informed consent, it should be the standard of care regardless of other therapies offered. Any legislation that bolsters palliative care efforts will be good for every patient with this diagnosis.

It's plausible that Kennedy received disease-modifying therapy up until the very end, but there's little doubt that he and his physicians put limitations on the intensity of attempts at life-prolongation towards the end. He died at his home and one can reasonably assume that he therefore did not undergo resuscitative measures, likely after an "advance care planning" discussion with his physicians (or maybe his lawyers) perhaps even before he was diagnosed. In other words, he probably stayed at home, took pain pills, and died. Who would argue with this approach (since most Americans would prefer to die at home and all want to be comfortable) and who would accuse him of "giving up on life" in the process of doing so? Which patient wouldn't benefit from an early discussion to clearly delineate what preferences they have for such therapies near the end of life, regardless of what those preferences might be? This is the intention of HR 3200 Section 1233.

As with Christian's recent post, pain medications and death are once again juxtaposed inappropriately. I've not known a patient with this diagnosis that didn't benefit from pain medications long before they died, and the cause of death in the end has always been the brain tumor or some other complication.

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Palliative Care Grand Rounds is up at Confessions of a Young (Looking) Social Worker. Surely she is a finalist for top blog title ever.

Go read the best posts from the blogosphere on palliative care and hospice themes and discover new blogs from a social worker's perspective. I am not sure why we don't have more social workers writing on blogs, they have some great stories and insight.

If you are interested in hosting a Palliative Care Grand Rounds you should a) have a blog and b) email me at ctsinclair -a@t- gmail d0t c0m.

Past Editions of PCGR:
2009
1.1 February 4th - Pallimed
1.2 March 4th - Dethmama Chronicles
1.3 April 1st - The Good Death
1.4 May 6th - Medical Futility
1.5 June 3rd - About.com The Palliative Care Blog
1.6 July 1st - Palliative Care Success
1.7 August 5th - Risa's Pieces

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2004 (1)

• Bioethics Discussion Blog by Maurice Bernstein (July 2004) (Doctor)

2005 (1)

• Pallimed by Rosielle, Sinclair and others (June 2005) (Doctors, NPs)^^

2006 (2)

• Episcopal Chaplain at the Bedside by Marshall Scott (January 2006) (Chaplain)
• Life in the End Zone by Dr. Muriel Gillick (January 2006) (Doctor)

2007 (3)

• Hospice and Nursing Homes Blog by Frances Shani Parker (January 2007) (Writer)
• Reflections by Dr. Bruce Campbell (April 2007) (Doctor)
• Medical Futility by Thaddeus Pope (July 2007) (Law Professor)^^

2008 (2)

• NHPCO Updater by various writers (June 2008) (Organization)
• Transcend Hospice Marketing by various writers (July 2008) (Executive)

2009 (7)

• Bart Windrum by Bart Windrum (March 2009) (Advocate)
• GeriPal by Alex Smith, Eric Widera and others (June 2009) (Doctors, nurses and others)^^
• Onco-PRN (Oncology Pharmacist Resource Network) by Chris Ralph (June 2009) (Pharmacist)
• Hospice Physician by HospicePhysician and HPMFellow (July 2009) (Doctor?)
• End of Life - Thoughts from and MD by Dr. Jim DeMaine (August 2009) (Doctor)
• Grief Healing by Marty Tousley (October 2009) (Bereavement Counselor) 
• The Hospice Clinician Blog (Outcome Resources) by Jim Joyner (Dec 2009) (MD?, PharmD?)

2010 (4)

• American Academy of Hospice and Palliative Medicine by various via AAHPM (February 2010) (Organization)
• Hospice and Palliative Care Charlotte Region by Andrea Powell (March 2010) (Organization)
• Palliative-SW by Social Work in Hospice and Palliative Care Network (March 2010) (Organization)
• Hospice of the Red River Valley by various (September 2010) (Organization)