Mastodon Pallimed

Monday, April 9, 2007

End of Life Care in the Blogosphere

Highlights from recent posts on other blogs:

1) In the health care world of blogs, you have bloggers that use pseudonyms and those that use their real names. Basically what it boils down to is credibility you have when you attach your name to something versus the freedom that anonymity gives you to say just about anything. We aim for credibility here but so does Paul Levy. If you do not know who Paul Levy is then you probably don't read a lot of health care blogs or you are not in the Boston health care scene.

Paul is the President and CEO of Beth Israel Deaconess Medical Center in Boston, and he has a blog where he posts his opinions about health care. He recently touched on the Dartmouth Atlas Project which compares resource utilization and cost in various hospitals around the country. This study has been highlighted by many to focus on the over utilization of "limited" resources near the end of life. His post is insightful and candid and a call for how do we fix the mismatch of technology and goals of care in health care. Feel free to check it out and post your comments and opinions. Not every day you get to tell a CEO of a hospital what you think.

2) The Wall Street Journal has started a health blog that has been pretty good, although it focuses a bit too much on pharma for my tastes. They recently highlighted a Boston Globe article noting that not all bed sores are preventable. I think this is something most health care people know, but as we see more decubiti we are learning more about how complex they really are. There is no new definitive study that prompted this article, but it is a balanced news article on a commonly misperceived subject (all bed sores are caused by neglect).

3) A post on Overcoming Bias (a statistics and bias blog) presents predictions as consumable goods. Basically that the prediction is made (verbalized) and consumed (listened too, thought about) and then it is not worth anything, until the next prediction is made. The post is about Friedman Units (6 months) and the war in Iraq, but I found this post interesting in that it reflects a situation that is common in near-death prognostication. When a patient is imminently dying and the family is looking to you for a prognosis, there are many times when a physician may say, "a few more days." But what happens when you say "a few more days" for a few more days?

4) And finally, Hospice Blog has a new address, www.hospiceblog.org If you have not checked out Hospice Guy and his Hospice Blog, you should. He has some great posts, like his current one on the dilemma about having hospice in an assisted living facility.

If you think any of these blogs are interesting try subscribing to them or check out the highlights (or at least what I think are the highlights) by scrolling down the left column of Pallimed to 'Christian's Shared Items'. I 'share' the posts and pubmed searches that I think are helpful to the palliative medicine community long before I ever get a moment to blog about them.

Photo from flickr.com http://www.flickr.com/photos/roblee/59757968/
Photo by Rob Lee



Monday, April 9, 2007 by Christian Sinclair ·

Friday, April 6, 2007

Having Problems with Signing Up for Email?

I was checking the email subscription status and noticed that there are 25 people who are in the process of registering, which means that you probably have tried to register but things have not worked right for you. If you are having any problems please try these few steps:

1. Tell your email program to allow emails from "feedblitz@mail.feedblitz.com" Often times your spam blockers may prevent this from coming to you because it sees it as a bulk email which is how spam is usually sent out. We are not spammers, nor do we sell or give away your address to anyone.

2. Re-register with a different email account. Many people I know have had some trouble getting their work email program to accept the subscription, but have had success with their personal hotmail, aol or gmail accounts.

If neither of these steps helps you, please email me at ctsinclair [at] gmail (dot) com

Friday, April 6, 2007 by Christian Sinclair ·

Wednesday, April 4, 2007

Withdrawing life-sustaining treatments in incapacitated patients; (A friend's) Cancer is good for you?


1)
The current Neurology has the American Academy of Neurology's updated position statement on life sustaining treatment for patients without decision making capacity (no abstract; issue table of contents here). It is explicitly written in response to legislative efforts of the last few years (post-Schiavo) to restrict the rights of patients' families and physicians to stop artificial nutrition in incapacitated patients if it is decided that that is what the patient would want. To this end it reiterates the AAN's 1988 position that it is permissible to stop life-sustaining treatment (including artificial nutrition/hydration or ANH) in incapacitated patients if that is consistent with their wishes/in their best interest. Some nuggets:

"[Recently] legislators in several states introduced bills that would create the presumption that any person who has been declared legally incompetent to make decisions affecting medical treatment or care would, in the absence of a carefully written advance directive that met specific statutory requirements, choose to receive ANH to sustain life. To withdraw ANH in these situations, the patient’s surrogate would have to prove by a clear and convincing standard that the patient would have chosen to have ANH withdrawn in the current circumstances. Furthermore, this proposed legislation would establish that elected officials, who in existing law have no legal standing as an "interested party" in such cases, would have the same right to challenge the administration or withdrawal of ANH as any true "interested party" (i.e., spouses, relatives) would. As of mid-February 2006, 20 bills, based upon model legislation from the National Right to Life Committee (NRLC), had been introduced in 13 states. Another 14 bills were modified to add additional restrictions."

These laws could, then, strip patients' families (and even legally designated health care powers of attorney) of the right to carefully deliberate over what their loved ones would want--what would be in their best interest--and give that power to the state/elected officials, at least when it comes to decisions about tube feeds. In a country in which people holding national office are willing to diagnose states of prolonged unconsciousness from watching 4 minutes of video and pass laws based on such tele-diagnoses, this is clearly not a good thing. I'm actually not sure of the status of these proposals: there hasn't been one in Wisconsin where I practice--leave comments if you know if any of these laws had been passed. I was under the impression that many of the proposals had failed to go anywhere in state legislatures because, among other things, a large majority of Americans think this is wrong--none of the state's business.

The statement is clear that the AAN doesn't endorse the withdrawing of ANH in permanently incapacitated patients of course, just when their loved ones believe it is a treatment the patient him/herself would reject, were they able to weigh in on it, upholding the long-held principle of patient autonomy over what is done to & stuck into her/his own body.

"The AAN opposes all state and federal legislation that would presume to prescribe a patient’s preferences for artificial hydration and nutrition. The AAN further opposes all state and federal legislation that limits the ability of patients to declare their preferences for health care through the use of living wills and advance directives or by discussion of their wishes with their families or surrogate decision makers. The AAN opposes all state and federal legislation that gives legal standing to elected officials (or their designees) to intercede in private decisions regarding the use of ANH. The AAN opposes all state and federal legislation that expands judicial intervention in a patient’s decisions regarding the use of ANH. The AAN supports state and federal legislation that promotes a better understanding of patient preferences for medical care (including the development of advance directives, living wills, and durable power of attorney declarations; the creation of health care directive registries; and the indication of such information on official identification cards) in accordance with existing AAN policies."

There's also a supporting editorial (TOC here) which talks about the role of the neurologist in discussing prognosis & treatment options/limitations etc. with the families of these patients. It's clearly written by a neurologist whose seen his share of poorly run family conferences. The image above is from the editorial--I have been so taken by its whimsical but straight-forward depiction of everything (well not even everything) that can go wrong in family conferences that I've decided to post it here, copyright concerns aside.

2)
And for a complete change of tone: The Onion is now posting video 'news' clips. Today's is about how having a friend with cancer is good for your health. It's hilarious, and rather obnoxious, and if you want it could be interpreted as a commentary on cancer patients being culturally and socially erased by their disease: their face of suffering, disease, and death--hard to look at--being pushed aside by the face of health, vitality, and 'hope.' (Thanks to alert reader Dr. Steve Rommelfanger for alerting me to this.)

A Friend's Cancer: Good For Your Health?



Wednesday, April 4, 2007 by Drew Rosielle MD ·

Monday, April 2, 2007

fMRI & the PVS; Opioids & respiratory depression

1) Neurology has an interesting article about using functional MRI to, perhaps, differentiate between a minimally conscious state (MCS) & a persistent vegetative state (PVS). It looks at 12 severely brain injured people (mostly traumatic; 7 clinically assessed as being in vegetative states and 5 MCS; most in the 2-6 month range post-injury). Patients had fMRI scanning while their own name was being spoken to them (the assumption is that this is a powerfully meaningful stimulus). Most of the PVS patients demonstrated activity (if any at all) isolated to the auditory cortex (as you'd expect). Two of them, however, had activity in 'higher order associative temporal' lobe regions--all the MCS patients did as well (the article is quite neurologically technical but basically this is taken as evidence of some higher cortical functioning). Very interesting is that these two patients, within a few months, had clinically improved had been reassessed as being in MCS (both were 4 months out from their injury at the time of scanning). The authors' gloss on this is that these two patients were probably were in an MCS but just outwardly appeared (at least temporarily) to be vegetative.

At this point it's too early to know what to make of all of this, but it seems likely that functional imaging is going to be incorporated in the diagnosis of these, and similar conditions. It's long been recognized that a few people in prolonged vegetative states eventually make some recovery (&, depending on who you ask, one should wait 6 months to a year before concluding that a persistent VS is a permanent PVS, particularly in the setting of traumatic head injuries). Hopefully techniques such as the above will be helpful in better prognosticating this. None of this changes the fact however that most people wouldn't want to be kept alive artificially in a MCS either and going from a PVS to an MCS is no real improvement in the big scheme of things. Indeed, the authors of this article noted that none of the MCS patients improved during the months of monitoring after scanning. The chances of recovering from an MCS to a decent level of function are much higher than a VS but still dismal; for me the priority is figuring that out.

(Thanks to Tom Quinn for letting us know about this article.)
(Image cribbed from fMRI's Wikipedia page).

2)
We usually don't post much about articles published in the major palliative care journals but I thought I'd comment on the recent trial looking at respiratory depression and opioid dose titration in Palliative Medicine. It's an interesting trial from the Cleveland Clinic and--while not a hot topic for the average palliative provider--concern for respiratory depression is a major fear amongst clinicians less familiar/comfortable with opioids. The study asks What happens to respiratory function during IV opioid titration for cancer inpatients with severe pain? Basically, it follows the 'natural history' of respiratory function as these patients were getting their pain treated by the palliative service. It looks at 30 patients (median age 60, most with ECOGs of 3-4, none on oxygen or delirious) admitted with severe pain who were put on parenteral opioid infusions. They excluded patients on oxygen because they wanted a "purer" look at oxygen saturation and end-tidal CO2. Most patients were chronically on opioids (median daily oral morphine dose of 73mg). Basically the patients were admitted, baseline data were taken, they received parenteral opioid dosing per the palliative service's routine practice, and follow-up data were gathered. They measured pain, respiratory rate, oxygen saturation, and end-tidal CO2 (basically exhaled C02 tension). These patients seemed to have received good pain control (mean pain decreased from 6.8/10 to 1.9/10), and the mean morphine dose equivalent more than doubled during the study (to 169mg).

The results were as expected. Mean ET-CO2 didn't change (went from 33.3 to 34.7 mmHg) across the study (they compared baseline to when pain was controlled); no patients manifested clinically significant respiratory depression; and oxygen saturation remained >92% throughout the study in all patients. That said, there were a couple transient episodes in 2 patients of low respiratory rate (<10/minute). style="font-style: italic;">background evidence but probably wouldn't change too many minds.

Monday, April 2, 2007 by Drew Rosielle MD ·

Wednesday, March 28, 2007

Fatigue & QOL in cancer; Bleeding in head & neck cancer; Perception of pain control; Palliative feel-goodery in the ICU


1)
Annals of Oncology has an article examining fatigue and quality of life in cancer patients receiving radiation therapy. It looked at 70 patients (breast or lung cancer, average age 64, ECOG mostly 0-1, about half had received chemotherapy) receiving curative-intent radiation. The data comes from a single administration of the ubiquitous EORTC QLQ-C30. Basically they found that fatigue had the highest correlation with quality of life (r of -0.76); fatigue's premiere importance to predicting quality of life withstood multivariate analysis, more than any other single symptom or group of symptoms.

It's long been recognized that fatigue is routinely found to be the most prevalent symptom reported by cancer patients (pretty much in any stage of their disease--even those who are years out from curative therapy). This study finds fatigue is the most important predictor of health related quality of life--at least in this group of cancer patients. The question, for me, is what is fatigue? Is it a discreet symptom (which then has discreet symptom-specific therapy like pain, vomiting, pruritis, constipation, edema, etc.) or is it something else? Because one interpretation of this study is that patients saying they are fatigued is sort of the same thing as them saying "my health related quality of life is bad." "I, globally, don't feel well or whole." This, is a different thing than, say, announcing, "I itch." What all this means, I don't know.

2)
Supportive Care in Cancer has an article looking at the natural history of patients who receive transcutaneous arterial embolization for massive bleeding in head and neck cancer. It reviews the experience of ~60 patients at a single center in Taiwan who received angiography and if possible TAE (which involves femoral artery --> carotid artery catheterization and then embolization with foam, alcohol, or coils to try to stop the hemorrhaging) after 'conservative measures' failed to control their bleeding. Median survival was 16 days and over a quarter of patients died within 48 hours of angiography. Patients who were able to receive TAE lived a median of 26 days vs. 8 days for those who didn't receive TAE. It would have been interesting if they presented the survival of patients who presented hemorrhaging but didn't receive angiography at all but oh well. For me this was an interesting piece of research insofar as it documents the natural history of these unfortunate patients with intractable hemorrhage: it is astonishgly dismal. These uncontrolled data suggest TAE prolongs life (triples median survival in fact) which is notable, but what those extra 18 days were like is unclear to me.

3)
Pain has an article about perception & pain in cancer patients with pain. It looked at ~300 adult cancer outpatients with pain (mean 6.7 on a 0-10 NRS)--they answered questionnaires about their pain. 90% of this group felt that their pain could be controlled & 70% felt like it currently was controlled. The researchers did some fancy statistical modeling (which I didn't understand at all) and conclude that their data suggest that: patients' perceived control over their pain was related to their symptom distress level (but not to their functional status). The authors seem to conclude that their findings suggest that patients' sense of control over their pain can be an important tool to decrease their distress from the pain. Perhaps true, but I remained unconvinced that what they were finding was anything other than a simple relationship: pain poorly controlled/pain causing much distress --> patients' 'perceived control' over their pain was diminished (or its inverse: pain well controlled --> patients feel they have control over their pain). This is distinctly different than concluding that perception of control leads to lower symptom distress. The fact that I remain unconvinced of this of course doesn't mean I'm right--maybe I just don't understand their model.

4)
Quality and Safety in Health Care recently had an article about the development of a 'palliative care bundle' in the ICU. The background on this is that a lot of the quality improvement initiatives in the ICU have been around 'bundles'--a set of practices (ideally evidenced based) designed to improve care/reduce complications/etc. in the ICU. Classic ones are the "ventilator bundle" (semi-recumbent positioning, daily awakenings, dvt prophylaxis, etc.) and the "central line bundle." This group developed their recommendations based on several sources (mostly expert opinion) and proposed their bundle (which includes triggers for communication/family meetings/discussing patient values/wishes/and goals of care, pain and symptom assessments, emotional and spiritual support). They even gathered baseline data in several ICUs to see how well these things were already being done in these units (very mixed results). Who knows where this will go but it is exciting. There certainly does seem to be a growing awareness, coming from within the critical care community itself (as evidenced by the growing amount of palliative care "flavored" research being done in ICUs, issues being devoted to palliative and terminal care in ICU journals, etc.), that great improvements can be made in 1) care of the dying in ICUs and 2) 'humanizing' the ICU experience, in general, for patients and families. This bundle project is very much a part of this trend. The article however also highlights how hard it is to find quality outcome research to base these guidelines in--there's a lot of opinion and experience to base things on but in order for practice to change frequently you need outcome evidence as well--so you can say "See, this really does make a difference. We are not just promoting a lot of empty feel-goodery." Thus, the importance of research like this.

Wednesday, March 28, 2007 by Drew Rosielle MD ·

Tuesday, March 27, 2007

One Of My Favorite Symptoms - Xerostomia (Dry Mouth)

BMJ published a one-pager on dry mouth (xerostomia). Xerostomia, xerostomia, xerostomia. Isn't just a fun word to say? If that is not fun enough for you try these: aptyalism, asialogenesis, asialisis, axerostomasialodesertion (I made the last one up.)

Dry mouth is one of my favorite symptoms. Now I say that it is one of my favorite symptoms, I obviously do not mean that I enjoy having it myself or seeing other people suffering from it. But I do find the symptom very interesting for a few reasons: ubiquity, poorly understood, limited treatments, plenty to educate on, our meds are part of the problem, etc.

Dry mouth is extremely common in the palliative care population, and comes in a range of severity from mildly annoying to very debilitating. Often times the main cause of xerostomia is the medications that we are prescribing to treat other symptoms. Opioids, anti-histamines, anti-psychotics, anti-depressants have all been implicated as contributing to dry mouth. But we have very little evidence for any treatments for dry mouth, so you have to be creative. And it is so common, you would think it would be so easy to study. The only good dry mouth articles were from the dental literature (free pdf here). A search of the palliative literature turned up little.

There is some conflicting anecdotes out there, so maybe some of you Pallimed readers can help clear some of this up by telling us what you advise for xerostomia (giving some evidence where you can).

Artificial saliva: Many articles support it, but staff often don't know about it, and patients find the thought unappealing and when they try it, I have had many patients say they don't really care for it. Do you often prescribe artificial saliva, and if so what brand works best for your patients and in what form (gel, spray, lozenge?)

Cracked lips: Articles encourage use of petroleum jelly, lip balms, carmex, etc to lock in the moisture so that your lips won't crack. But there are some out there who claim any lip balm product may actually exacerbate the problem (although lightly disproved by snopes.com). Most of us know glycerin swabs are out, but some articles I found claimed that a easy saliva substitute is glycerin mixed with water. What do you suggest for cracked lips?

Natural saliva induction using citrus: Some have advocated for pineapple, orange, lemon slices to smell, taste, or chew, but some of the basic science mentions they acidic nature actually causing more harm because of the lack of saliva and the buffering ions. Do you make suggestions about using citrus?

Do you prescribe pilocarpine? I have tried prescribing the eye drops with flavoring added by the pharmacy with minimal improvement of the underlying bitter taste. No patient has been really impressed with the results. I have not gone to Salagen (pilocarpine lozenges) yet, because the few studies I looked at minimally improved salivary output compared to placebo despite costing >$100/month (per HPC Formulary).

Sip water frequently: Makes sense right? Until you look that this may actually reduce the mucus film that builds up from the natural viscosity of saliva. And may increase nocturnal awakening secondary to fluid intake.

Sorry about all these questions, but since there is little out there I thought I would pose some of my clinical dilemmas and get input from the palliative care community. Never thought spit would be so perplexing.

As a bonus question tell us your "favorite symptom." And maybe we'll devote a post to it later.

Picture courtesy of More Altitude via flickr.com

Tuesday, March 27, 2007 by Christian Sinclair ·

Thursday, March 22, 2007

Oregon DWD 2006 Report;

Oregon has released the 2006 annual report on the Death With Dignity Act. If you are not familiar with this report, the Department of Human Services reviews important data collected from physicians about how the physician-assisted suicide/death law is enacted. Particularly they collect demographics about the patients who receive prescriptions and track how the patients die (natural causes vs. taking the prescribed dose of barbiturate).

During 2006, 65 prescriptions for lethal medications under the provisions of the
DWDA were written (figure 1). Of these, 35 patients took the medications, 19 died
of their underlying disease, and 11 were alive at the end of 2006. In addition, 11
patients with earlier prescriptions died from taking the medications, resulting in a
total of 46 DWDA deaths during 2006. This corresponds to an estimated 14.7
DWDA deaths per 10,000 total deaths.
Most of the patients had cancer and almost all of the 46 were insured, and many had a higher education (BA/BS). Of note, 4 people had complications which included regurgitation.

As in past years the requests mainly had a foundation in issues surrounding autonomy, being a burden and loss of dignity/independence, which are things that do not have a successful medication available like for depression, anxiety and pain. Issues of autonomy and dignity are deeply rooted and require much attention and human capital to make sure they are protected.
As many who work with patients near the end of life, requests for hastened death are not uncommon, and require a delicate and compassionate response that is in line with your state laws, but at the same time does not abandon the patient when they most may need support and care. Check out the two-page report (4 minutes of reading tops) and some of the other files on the website.

And for homework, I have a question from a medical student that I could not answer. maybe Pallimed readers could help me.

If a person dies by physician-assisted suicide, can the family still collect on the insurance policy, or was that even considered when the law was legislated?

(BTW this question was not offered to me with a focus on greed/money/etc., but rather in discussing the systems issue of even considering something like PAS in the first place and how the practice may have repercussion outside of the immediate medical situation)

(My Standard Disclaimer: 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.)

Picture from Flickr.com, user SeamusMurray

Thursday, March 22, 2007 by Christian Sinclair ·

Do not hospitalize orders; Honesty & optimism; Discussing hospice


3 things:

1)
The latest Journal of the American Geriatrics Society has an article on factors associated with 'do not hospitalize' orders in demented nursing home patients. It involved a nation-wide (U.S.) sample of patients (~90,000) and used minimum data set data. Overall 7% of demented NH residents had DNH orders (wide range--0.7% in Oklahoma and over 25% in Rhode Island). Things that were associated with having a DNH order included increased age, being white, being in an urban NH with a wealthier patient mix, being on a special dementia unit, being in a NH with an NP or PA on staff, and having a living will and health care power of attorney. The percent of your NH's patients receiving hospice care was not associated with having a DNH order although being in an area in which fewer NH patients died after passing through an ICU did predict having a DNH. What's interesting to me about these findings is not so much what was associated with having a DNH but the wide variation in practice by geographical region, social class, and type of NH. There are probably lots of reasons behind this but it seems that at least in part local medical culture determines whether a patient (...really their family) gets the choice of not having an ambulance ride in their last week of life.

The same issue also has several articles on preventing falls in nursing home residents (issue's table of contents here).

2)
Supportive Care in Cancer has an article on physicians' reluctance to disclose difficult diagnoses. Specifically, it's a narrative review looking at practices (including patient preference and physician behavior) surrounding disclosure of difficult news (diagnoses, prognosis, etc.) in oncology and psychiatry. For the Pallimed reader it has a detailed, narrative summary of the research into patient's preferences and physician practice surrounding disclosing bad news including some interesting stuff about temporal trends & geographic variation in physician practice. Of interest to me, although I guess it makes sense, is that overall it seems that psychiatrists are more reluctant to disclose difficult diagnoses to patients than oncologists & that psychiatric patients (or at least random people when surveyed) are less likely to endorse wanting to know detailed honest information than cancer patients. This seems particularly true of dementia, which makes sense in a way.

The article also reminds us of this factoid: one study showed that "although 100% of participants wanted doctors to be honest, 91% also wanted them to be optimistic." I still have vivid memories of being a medical student and witnessing this (wonderfully caring) geriatrician crouching at the bedside and clasping the hand of a deaf, demented, dying patient and yelling "WE'RE GOING TO MAKE YOU BETTER." Part of the art of medicine, surely, is to learning the art of honoring both aspects of patients' wishes: honesty and optimism, and not just the easy one. Given that the same group of patients said they wanted both honesty and optimism I'll assume that the patients weren't saying they wanted their docs to say "You have incurable cancer and will likely die within the year but I'm going to fix it anyway. Prepare for a miracle cure!" Instead I'd assume they meant by 'optimism' "You have incurable cancer and will likely die within the year but I will promise you careful, compassionate, and good care. Whatever happens you will not be alone, your family will get the help they need, and I will make sure you are safe and get the right care."

Anyway, enough preaching to the choir.

3)
Annals of Internal Medicine has a piece on discussing hospice with patients. It's aimed at the general physician and provides a lot of basic, nuts & bolts information on hospice services as well as a practical walk-through of discussing hospice in the context of a goal-setting discussion. It's a good article for the teaching file as well as for interested non-palliative care trained colleagues who want "to do it right." It also addresses discussing goals and terminal care with patients who aren't ready for hospice care despite it being medically appropriate.

by Drew Rosielle MD ·

Pallimed Passes 100 Subscribers!

Since the Pallimed site re-design and the AAHPM conference, the site has really taken off. Pallimed now has over 100 daily readers through our subscription services. We had been bumping up against 100 for a while, but all of a sudden we just busted on through with an upsurge in RSS Reader subscribers. As of this post we have 121 subscribers!

So Drew and I just wanted to take a moment to say thanks for coming to the site. As always feel free to spread the word. If you would like Christian to email you some Pallimed cards to pass out to your hospice team or your palliative care team, he would be happy to mail them to you for free. Again this site is not-for-profit and we pledge to keep it that way.

If there is anything that you think we should add, change, or remove, or you just want to complement or criticize please feel free to leave a comment on this post or email us directly at:

drosielle @t gmail dot com
ctsinclair @t gmail dot com

We are going to roll out a new feature in the next few weeks so look for that soon. Nothing major, just something new.

(Email addresses look weird to prevent spam bots from hammering our emails!)

by Christian Sinclair ·

Tuesday, March 20, 2007

Ethics in the ICU; Prognosis; Computers to tell us what patients believe


Many, many items in brief....

1)
Critical Care Medicine had a supplement in February about ethics in the ICU. Many articles here, including one on end of life ethics in the unit. It opens with this rather remarkable salvo:

"Originally conceived and operated as short-term, life-saving vehicles for acutely ill or injured patients, modern intensive care units (ICUs) have expanded into entities that care also for chronically, although seriously, ill people; in fact, ICUs often become repositories for patients who have little or no chance for survival. Sophisticated technology frequently takes on a life of its own; the sheer momentum of processes inherent to ICUs may prevent healthcare providers from taking a step back to make well-considered decisions, especially at the end of a human life."

The rest of it is not quite so colorful but a good read; covers the ethics basics, illustrates them with some real cases, and talks quite frankly about the culture of the ICU, power relationships between medical people & patients/families & between physicians and non-physicians. The article, which is written by a single person, benefits from straightforward, idiosyncratic, and at times informal language--none of this formal, committee-written prose. I guess what I liked most about the article is that rather than being a dispassionate discussion of end of life ethics in the ICU, it is a passionate, personal (but well-researched and -informed) reflection on the vagaries & missteps of ethics, informed-consent, decision-making, autonomy, etc. as they apply to very real & really suffering people & families in our ICUs. Stuff like this:

"Healthcare providers are human beings. Patients are human beings. The provision of health care takes place in an elaborate, intricate, imperfect, and unpredictable human society. Medical clinics, hospitals, and, especially, ICUs are bewildering, frightening, and incomprehensible to the vast majority of people. The essential workings of the ICU—all the participants, the hierarchies, the machines, the medical code, the severity of illness—are completely foreign to lay people; they have nothing in their experience, educational or otherwise, to use as an anchor for making sense of their surroundings."

2)
Archives of Gerontology and Geriatrics has a report on mortality in elderly adults with bedsores. It's observational data from an Italian cohort of frail, community dwelling older adults; 18% of these patients had bedsores & 29% of these patients had died within the year. It's a relatively small study, and likely not very generalizable, but there's not too much out there on the natural history/prognosis of bedsores in the elderly so any information is notable.

3)
A recent Archives of Internal Medicine has an outcomes article about the Oncotalk program (it's an educational program aimed mostly at oncology fellows about communication skills surrounding breaking bad news, discussing goals of care, etc.). It was effective & it's gratifying to see these outcomes presented in a major general medicine journal: it furthers the message that these skills, and projects to improve these skills in medical trainees, are of interest to the general medicine audience--at least internal medicine.

4)
The same issue also has an article on shared decision making in the ICU. It comes from a project where physician-family conferences in the ICU were recorded and evaluated. It found that 'more complete' shared decision making was slightly predictive of improved family satisfaction, and that 'less complete' shared decision making occured with lower educational levels of the family. For those of you wondering what shared decision making is, there is not, actually, a consensus on what it really means: the authors define it as including "(1) discussing the nature of the decision to be made, (2) exchanging relevant medical information and information about a patient's values, (3) checking for understanding of information, (4) discussing preferred roles in decision making, and (5) achieving consensus about the treatment course most consistent with the patient's values and preferences" (i.e. it's good decision making).

5)
The same issue has another article about CHF mortality and prognosis: in a cohort of patients in Massachusetts hospitalized with CHF (average age 76 years) 1 year mortality was 38% and 5 year was nearly 80%. This is what people mean when they CHF has a worse prognosis than many cancers....

6)
PLOS Medicine has an article about using computer-based decision-support to determine what incapacitated persons' medical decisions would be . (PLOS Med is an online open-access journal.) The article is mostly a hypothetical exploration of the idea that, based on the previously published research, one could create a program that (after entering patient demographic data) would tell you pretty accurately if the patient would want treatment X (like CPR if they were in a permanent coma). Part of the reason this could be successful is, of course, that family members do a pretty poor job of identifying patients' treatment preferences. Yes, this idea sounds batty and dangerous, and the authors aren't endorsing going out and implementing such a decision-aide currently (the science just isn't there among many reasons why this couldn't work now) but they are proposing, in principle, that it could be done and, in principle, be more accurate than family members. My counter-proposal to this would be a time-machine--going back in time and just asking the patient would be most reliable.

7)
Well I'm not even done with the list I had accumulated but that's enough for tonight. Happy Spring--Drew.

Tuesday, March 20, 2007 by Drew Rosielle MD ·

Pallimed | Blogger Template adapted from Mash2 by Bloggermint