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Day to Day, a radio program on NPR, had a good segment (4:47) on the difficulties and opoprtunities in caring for Holocaust survivors as they age. The primary focus was not end-of-life situations but it has implications for hospice & palliative medicine. The piece is a good example of how understanding and knowing the individual can really help give the best medical care. I have only cared for two holocaust patients (that I am aware of), but I did not encounter any of the issues brought up in the piece. Often a pleasant or at least neutral situation with patients near the end-of-life is when they 'see' or 'hear' people or re-experience memories from the past. For a holocaust survivor this may be much more difficult. April 16th is Yom Hashoah, also known as Holocaust Remembrance Day.

One highly reccommended book for the HPM practioner is Dr. Victor Frankl's book Man Search For Meaning. He was a holocaust survivor who was able to find meaning in life despite being in concentration camps.

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The Washington Post and the USA Today ran articles in the past two days about very emotional and controversial issues in medicine. WaPo (or the Washington Post to those not in the know, as I was until today) covered the medical futility case in Texas where:

A 17-month-old deaf, blind and terminally ill child on life support is the latest focus in an emotional fight against a Texas law that allows hospitals to withdraw care when a patient's ongoing treatment is declared "medically futile."

The Texas Medical Futility law allows physicians with the support of the hospital to declare any treatment futile, and allow the patient/family unit 10 days to find another medical facility to care for them. If one is not found, the life-supporting treatment may be stopped. Or at least that is the way the law is written. I don't think they had anything written about what happens when the case gets into the media and appeals for injunction are made. I won't go into the details of the case on Pallimed because 1) I am not a journalist and 2) the WaPo does a pretty good job describing some of the salient points which I will highlight below.

1) Patient is a 17 month old boy
2) The child has Leigh's Disease , a rare metabolic disorder.
3) Prognosis: (severe form: less than a few years, partial form: into the teenage years)
3) The child is not brain dead (thereby meeting most state laws for allowing withdrawal of life-support)
4) The mother acknowledges the terminal course ("I just want to spend time with my son. . . . I want to let him die naturally without someone coming up and saying we're going to cut off on a certain day.")
5) No trach or PEG yet but planned if a facility accepts
6) The law was approved by then Gov George W Bush
7) Right to Life groups are supporting the mother and patient to continue treatment
8) The patient has insurance via Medicaid and the hospital says money is not the issue.

Things that I do not know from some research on this story and my concerns about these issues not being mentioned.

1) Involvement of a ethics consult. I am guessing yes, but without news stories demonstrating the process the hospital and medical staff is going through it makes the decision appear rash and without appreciation for the complexities of the situation. Any ethics consult I have been involved with is long and drawn out and generally involves people getting into heated arguments and disagreeing vocally. I would imagine this happened behind closed doors in the hospital, but it would pay to give the hospital credit for going through this process.

2) Involvement of a pediatric palliative care team. I am also guessing this has happened, but again it should be mentioned as part of the ongoing process.

So there is story number one...now for story number two from the USA Today.

The USA Today had a large article about the ongoing debate and advancement of the California Physician Assisted Suicide Bill. From the tone of the article the bill is advancing and has a high potential to pass. The law is modeled after Oregon's law which has been in place for eight years.

The reason I feel this is such an important issue to follow for the Hospice & Palliative Medicine field is we will be asked questions about it. We should have answers thought out ahead of time, because this is such a complex topic. Can you easily explain the ethical and medical differences among euthanasia, physician-assisted suicide, withholding unwanted treatment, withdrawal of unwanted treatment, and aggressive palliative care? If not you should brush up on it because your community, your local media is going to be asking you questions. And not only asking you, but asking your co-workers. "Oh you work for Hospice X, what do you think about that bill in California/baby in Texas?"

One key point the article made is comparing the number of deaths if the rates are similar to Oregon's. If the rates were similar about 500 people a year would die under the California PAS law. Knowing how much California is a bellwether state this IS going to be a national issue.

So that brings me to my final point. Will medical suicide and medical futility be the hot button, most-talked about, divisive issues of the Presidential Race in 2008? It almost seems like a perfect storm.

1) No political candidate has any overused canned reply to medical suicide/medical futility.
2) It is similar to abortion in being divisive, but not as ubiquitous a topic in political circles, so it may appear more 'fresh' and therefore more interesting than the same ol' stuff.
3) Health care, health care health care. Everyone is talking about it a big issue. This gets down to the meat of it.
4) Increasing health care expenditures. How easy is it to say no more payment for treatment X on a policy level as opposed to a personal level? See Boomsday for a cutting and sarcastic look at government encouraging death as a way to cut health care costs.
5) Political candidates and their own health care issues. Elizabeth Edwards, Fred Thompson, John McCain. Couldn't you see that being used in the debates as a zinger question by an opponent?
6) Iraq is important but I feel that's not going to draw a lot of attention when the candidates are all going to say similar things. You won't be able to separate candidates on this issue.
7) The environment is important but again I don't see wide divides. Going green is the new warm fuzzy for politicians.

So sorry to do some political analysis on this medical blog. But you heard it hear first this is going to be THE issue of the 2008 Presidential Race. Tell your friends. Then it will be a self-fulfilling prophecy.

Now back to Pallimed's regularly scheduled programming. I apologize about the long post.

PS. I am introducing a new term here: Medical suicide, it may not catch on, but I always tired of saying/typing physician-assisted suicide and what about the pharmacists, nurses and other medical staff that might be involved in the process. And no one knows what PAS is. Will see how it flies, I am guessing not very far.

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

Photo from flickr.com
Photo by Lee Jordan http://www.flickr.com/photos/leejordan/452827306/

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Several things, relatively briefly:

1)
The latest JCO has a couple of articles to note. First presents some research looking at if female cancer patients identify different individuals as their health care proxies and primary caregivers. It is from a survey of older women with cancer and finds that only about half of them name the same person to be their health care proxy decision maker, emergency contact, as well as their primary support person/caregiver. This finding was true even for women in partnered relationships. The second is a systematic review of radiotherapy for analgesia of painful bone metastases, specifically looking at single vs. multiple fraction radiotherapy. It confirms the consensus: they are about equally effective in providing analgesia, toxicity is about the same, but people receiving single-fraction are distinctly more likely to need re-treatment.

2)
March's Journal of Supportive Oncology has a few articles to note (several don't have abstracts; table of contents here; pdf's are available free even for those without abstracts). First is a review on warfarin use (and the many, many ways it can go wrong) in cancer patients: a good all around primer/review on the subject. Next is a narrative summary of 20 years worth of cancer symptom research by the NCI & the North Central Cancer Treatment Group (Mayo). By narrative I mean a rapid fire review of the supportive cancer/symptom research of this group touching on everything from pain to mucositis to anorexia to hot flashes. It's the sort of article to keep handy as a quick evidence based reference list for cancer symptom research--i.e. it's got a killer bibliography. It also points to the frequency but importance of negative research--research that indicates the intervention in question isn't helpful. Without it we'd all be peddling pentoxifylline for anorexia. There's a supporting editorial by Charles von Gunten wondering why the NCCTG's cancer symptom research hasn't been replicated elsewhere--why there is such a dearth of organized, sustained symptom research elsewhere, like by ECOG or SWOG? His assessment: lack of money and lack of leadership, although NPCRC is a good sign.

3)
Internal Medicine News recently had a few of articles about palliative medicine. First is one overviewing quality/performance measures in palliative care. It mostly focuses on the work of the National Quality Forum. Another discusses the American Osteopathic Association's approval of palliative medicine as a subspecialty under their board (this is not big news; it was expected to have happened and I guess it did in February). The final one is an editorial which seems to have a bone to pick with hospice/palliative medicine as a subspecialty. Sort of. I think you'll see what I mean if you read it. It seems to criticize HPM for being a 'place' based speciality (hospice) although, clearly, it isn't. Then it criticizes HPM for the following reasons:

"There is a special peculiarity to end-of-life care, in that it may be applied to a patient of any age, of either sex, of one of many cultures and beliefs, and with one of any number of physical conditions. The “dying process” is sometimes viewed as if it were a single definable and predictable process for all who are dying, as opposed to a unique individual experience shaped by the terminal disease and by the attitudes and circumstances of the patient's entire life.
In hospice, system requisites—not individual patient requisites—are applied to the dying at enrollment: the defined “time taken for dying” criteria for entry (occasionally resulting in the discharge of a patient who doesn't die fast enough); mandated concurrence with a Do Not Resuscitate order (despite the desire of some people to fight to the bitter end); and favored diagnostic categories (with cancer patients, for example, often getting preference over equally ill emphysema patients)."

As for the first point, we, as a profession, seem to be very aware of death being a unique individual experience etc. etc.; that is why, among other things, we are deliberately & self-consciously inter- & multi-disciplinary because individual patients and families have needs that are complex, unique, and usually beyond the skill set of any one profession, let alone individual. The second set of critiques, about hospice system requisites are either 1) inaccurate (the DNR bit), 2) descriptions of poor care, or 3) well-recognized limitations of the (at least U.S.) model of hospice care as defined by Medicare. Hospice isn't for everyone; most palliative care professionals would be the first to tell you that. I'm picking on the parts of the editorial which galled me; many other points were welcome, particularly about problems with further fracturing patients' care with another subspeciality thrown in the mix. However, by the time it came to its last sentence I frankly had no clue what the editorialist was talking about:

"As we know from the lamentable history of the 20th century, when the system becomes the patient, terrible things can happen. This frightens me and should frighten us all."

Huh?

(IMN's website currently appears to be allowing free access to articles for everyone; it's usually free for those who sign-up. I've found it a little testy today however but hopefully it won't give readers major trouble--the March 15th issue is what you want.)

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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

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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

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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?

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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.

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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.

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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

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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