More on “futility”

A couple of weeks ago Drew blogged on a short essay/case report in Journal of Clinical Oncology that addressed a physician’s struggle in prescribing chemotherapy that he considered to be futile. The same day I got my latest issue of Oncology with an article (with 2 invited responses, here and here) on patient demands for chemotherapy that clinicians feel is futile. I believe this is the inaugural offering in the new feature, “Areas of confusion in oncology.”

The Oncology article is a fairly wide-ranging piece that begins by addressing what is meant by “futile care.” The authors point out that there is no common or consensus definition [I imagine that at least some of this is one of those “I know it when I see it” phenomena]. A recurring theme in this paper is discordance of perceptions and perspectives between patient and physician. Expert panels struggling over guidelines, a physician facing a desperate or resolute patient, children not willing to contemplate “giving up” on Mom, a patient with a religious belief that “everything” must be done, third-party payers—whether private or government, and John Q. Public (i.e., “society”) in the grip of a compelling drama may have varying and conflicting perspectives.

The authors quote a 1993 article in which the reader is advised to distinguish an effect from a benefit. That dovetails nicely with an observation later in the paper that some patients overestimate prognosis because they confuse response with cure.

Not surprisingly, a major cause of the disparate perceptions is assigned to inadequate communication between patient and physician. And not all the blame falls on the physician. When each is waiting for the other to bring up discussions of goals, values, quality of life, prognosis, end-of-life issues, etc., “misalignment of perceptions” can be expected. The physician may even have thought that s/he provided adequate information on prognosis. But if they provide too wide a range of outcomes, don’t periodically come back to the discussion, or don’t check in with the patient to see what was understood, the discrepant perceptions can grow ever wider. “Lack of patient-provider communication regarding prognosis, goals of therapy, and benefits of aggressive symptom management (hospice) all play a role in the delivery of futile chemotherapy.”

There are several interesting tidbits provided that may be helpful to both experienced clinicians and to students or junior clinicians who are trying to get their heads around the issues related to futility dilemmas.

• Over 20% of Medicare patients begin a new chemotherapy regimen within 2 weeks of death
• A recent survey of oncology practices showed a range of 0-34% giving chemotherapy within 2 weeks of death
• At least one study has shown that some patients with previously treated non-small cell lung cancer would accept chemotherapy with a survival benefit of as little as one week, while others would not take it even for a benefit of two years
• Another study showed only a 25% concordance between what patients said their decision-control preferences were and the provider’s perception of the preference.
• Some patients appear to be willing to discuss hospice with a physician other than their oncologist, but not with the oncologist [is it too hard for the patient; does the patient think it will be too hard for or hard on the oncologist?]
• In one study, physicians initiated a hospice discussion 50% of the time, patients or families one-third of the time
• One-quarter of physicians will occasionally administer futile chemotherapy to maintain patient hope.
• The median length of hospice stay is no longer lengthening, but getting shorter (down to 26 days in 2005 vs 29 days in 1995); one-third enroll in the last week of life and 10% on the last day.

An important observation that I have never heard invoked in discussions among clinicians about futility, is that there insufficient information available for patients with advanced disease to access independently. Accurate but vague statements such “current treatments do not cure the cancer” are not helpful for a patient struggling with finding their own process for decision-making. There is very little to be found about the advantages and disadvantages of chemotherapy at this stage, what a patient might reasonably expect, or alternatives such as palliative and hospice care. These points relate to patient questions such as “will I feel better or worse?” (if I take the chemotherapy); “will my cancer shrink [and what does that mean in the short & long term]?;” “how do other people make decisions about these things?”

The authors’ recommendations:

• Don’t go it alone—use trusted colleagues to share concerns, avoid isolation and burnout
• Ask the patient how much they want to know, how they want to make decisions
• Bring up hospice early as a future possibility; emphasize nonabandonment and aggressive symptom management; avoid euphemisms: use “death” and “dying” [while I personally agree with that philosophy, there are cultural overlays and sensitivities than need to be considered.]
• Use family conference as a way to get the same information simultaneously to multiple people who may be family decision-makers; be prepared to share actual studies to bolster your position that there is little or no benefit to further chemotherapy and that there may be significant burden or harm [is “symptom burden” a useful construct for patients who have been focusing on tumor shrinkage? I think it is.]

Equally valuable as the main article, the reviews provide valuable nuance and perspective. One practical idea is the "differential diagnosis" of a patient request that the oncologist thinks is not in the patient's best interest. What underlies the request--unrealistic expectations? Fear of abandonment? Present hospice as a treatment [reminiscent of Andy Billings' statement that family meeting is one of palliative care's most important procedures]. "A 20-60 minute conversation between an oncologist and a patient . . . is miniscule when weighed against a lifetime of family values, traditions, culturally held beliefs, and deeply entrenched religious beliefs."

Khatcheressian J, Harrington SB, Lyckholm LJ, Smith TJ. 'Futile Care:' What to Do When Your Patient Insists on Chemotherapy That Likely Won’t Help. Oncology 2008;22(8):881-887 (free full text) http://www.cancernetwork.com/cme/article/10165/1168027

Anna Pou Interview

Dr. Anna Pou, the doctor who was accused of murdering patients during the aftermath of Hurricane Katrina gave a rare interview covering her experiences and discussing a new law to cover medical personnel who assist in a disaster. The grand jury and attorney general eventually dropped the charges but she still faces two civil suits.

Here are some quotes from the Associated Press article:

When nightfall came, the hospital and the city were in darkness. Water pressure dropped, toilets backed up and the temperatures began to swelter.

"The smell got to be rancid in no time," Pou said. "It burned the back of your throat."

...

Pou said staff struggled to climb stairwells, carry supplies, and spent two-hour shifts squeezing ventilators to keep patients alive.

"The heat was so terrible, it wore you down," Pou said. "We were trying to keep the patients comfortable. The 9-year-old daughter of one of the nurses even took shifts fanning them."

...

"I felt very alone," Pou said of her year of fighting the criminal accusations. "Even if people were around me I felt an intense loneliness. It was as if no one knew what I was going through."

An International Review of Hastened Death

(Hopefully not a recurring feature)
*Please read disclaimer at the end of post*

The New York Times #6 most emailed article today is about the underground practice of hastened death via the procurement of barbiturates in Tijuana, where the medications are intended for euthanizing animals, not humans. It is interesting this practice fits under neither commonly used terms for hastened death by medical means:

"euthanasia" - the administration by a medical professional (or other person) of a prescribed medication with the intent of causing a hastened death

"physician-assisted suicide" - the self-administration of a medication prescribed by a physician with the intent of causing a hastened death

This article describes people obtaining the medication without a doctor's prescription, therefore 'physician-assisted' is a disqualified descriptive. They merely need to show a picture of the medication they want at the Mexican veterinary stores. So I guess this is simply 'suicide?' Although I think 'suicide' is too broad to define the particulars about a situation where someone is in the terminal phase of a condition versus someone suffering from a severe depression but no terminal illness. But to label this 'terminal suicide', 'hastened death in the terminal phase' or some other contortion feels clumsy and is bound to cause even more confusion.

Regardless of the term used, the issue has been made more relevant with a couple high profile cases of medicine and hastened death.
In Australia, Exit International and Philip Nitschke have been making the papers and TV (and are featured in the NYT article) with a public campaign to legalize euthanasia including You Tube Videos, film screenings, book promotions (attempts at banning it are underway in Australia and New Zealand), workshops and political initiatives. More focus has been on Mr. Nitschke and his group since the recent manslaughter conviction of a woman who gave a barbiturate to her partner who had Alzheimer's. Another recent case is also being featured of a woman who was depressed but not terminally ill who supposedly relied on information form Exit International's materials to kill herself.
In Germany, a lawyer/politician advised, and videotaped a 79 year old woman who prepared and self-administered a 'lethal cocktail.' The woman was not terminally ill but chose hastened death because she did not want to go to a nursing home. The politician, Roger Kusch, was inspired by Dignitas, a pro-euthanasia organization based in Switzerland who has many people from Germany requesting its services.
In Scotland, a Member of Scottish Parliament, Margo MacDonald has filmed a documentary with the BBC and proposed legislation to adopt the euthanasia and assisted suicide laws similar to The Netherlands.
In Italy, a case eerily similar to Terri Schiavo and Nancy Cruzan is being discussed publicly and was recently covered in TIME magazine. A 20-year old woman in a car accident (in 1992) now comatose and with a feeding tube that her father wants to have removed (and has fought for since 1999) was allowed by Italian courts to stop her artificial nutrition via feeding tube despite much opposition. The case is now pending appeal despite already having gone to the Italian Supreme Court in 2002.
In Canada, Samuel Golubchuk, an 84 year old man whose family fought hard to continue aggressive life-prolonging measures died 9 months after doctors initiated discussions about end-of-life decisions. He died on full life support measures. If his life support was withdrawn it would have been illegal since a court ordered physicians and the hospital to continue partly based on the family's belief of hastening his death would be a sin under Orthodox Jewish law. The case was to be heard by a full court in September. Doctors refused to care for him, likening his medical treatment to 'torture.'In England, a man who was refused Sutent, a prostate cancer drug, by the National Health Service suffocated himself.

So why is this all important to palliative care?
Because guess who thinks about these things:

• your patients
• their families
• medical professionals who consult you
• the public

and they may never bring it up with you for a multitude of reasons. Or they may hint at hastened death, but never start an open discussion. Or they may make a sly joke about it, waiting to see how you respond. Or they may assume what is good standard palliative care is really euthanasia.

Good hospice and palliative care practices can help people discover hastened death does not have to be the easy way out. If the lines are too blurred between the legal and illegal our field has significant trust to lose with the public and our peers. Being educated and aware of the public debate over hastened death is a responsibility for palliative medicine to ensure the safe, ethical, and legal care of the patients and families entrusted to us.

(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. Links do not represent endorsement.)

Surrogate decision making sanity

Annals of Internal Medicine has a discussion of surrogate-decision making that echoes (in a much more organized and erudite way) some of the murmurings we've made on the blog before about surrogacy, advance directives, etc.

The discussion posits the standard/orthodox view of surrogate decision making. A simplistic summary of this is that a surrogate's role is to make the decision that the patient would make if he or she was able to, based in some prior knowledge of a patient's values/wishes/wants if scenarios X, Y, or Z were to occur. In reality, (reality meaning what patients and potential or real surrogates actually reveal in research studies about how they want decisions made), surrogates do a generally poor job of predicting what patients would want (even if they've discussed it or there's a written document to that effect) and patients/surrogates don't seem to endorse the entire 'substituted judgment' standard in the first place. That is - the standard model of surrogate decision making doesn't work as its supposed to, and many patients don't really want it to work that way, anyway. A quote, italics mine:

Nevertheless, research suggests that patients, surrogates, and even their physicians often operate independently of these standards. For example, despite the formal recognition of the primacy of patients' stated wishes, there is growing awareness that patients do not value or even define personal autonomy uniformly. Moreover, many patients do not necessarily want their surrogates to adhere to their specific treatment preferences or to follow the standards in sequence, but instead wish them to respond dynamically to actual clinical situations in order to maximize their evolving, contemporaneous interests and to make judgments that integrate both medical and nonmedical considerations. One nonmedical consideration, for example, is that many patients consider placing trust in their surrogates more important than assuring their surrogates' ability to accurately predict the patient's own decisions. Some patients modify their preferences to accommodate their family members' concerns, and some give weight to the distress they anticipate their family will experience from unavoidable choices.

The 'alternative' model here being one of people caring about a process of decision-making (placing trust in a loved one, etc.) rather than pre-ordaining what those decisions should be.

Another quote on the vagaries of advance directives:

For example, the statement "I never want to be fed through tubes" made by a now-incapacitated patient would require an interpretation of the phrase "to be fed." Did the patient mean only ongoing and indefinite support, or time-limited or goal-directed nutritional support as well? Ostensibly clear wishes that, in fact, require interpretation are at a point on the continuum somewhere between known wishes and substituted judgments.

For every patient I've met who's wishes were clearly consistent with a DNR/DNI order (and were full-code because no one had bothered to ask), there are ones whose families are struggling with their statements about 'not wanting any tubes' or 'not wishing to be hooked up to life support.' Did they mean never, under any circumstances? Or just when it would likely maintain them in a permanently incapacitated state, or prolong dying, or in some other way be non-restorative? Or patients who wrote (or checked the check-box on some forms) "I want cardiopulmonary resuscitation" or some similar variation. Always? Under all circumstances? When their physicians strongly believed it would not save their life and only prolong their death by a few ugly minutes or days? By writing that did they intend to communicate to families: "it is my intention that you ensure that I die ventilated with someone pushing on my chest no matter what"? Advance directives (as many of them exist) and even 'talking with your family' often can't fix these problems. Almost no one (...almost!) wants to be CPR'd to death, or to die on a vent, and these terrible decisions often come down to identifying when someone is 'really' dying, when these interventions are 'really' not going to help, to nurse families through the process of knowing when enough is enough so to speak. I.e. the real decision is not whether or not to perform CPR (or whatever) but whether or not the patient is 'dying' (or has reached some point of sufficient prognostic certainty and gravity).

I'm rambling here, to be sure, and to be expose myself a little here I think I'm working through my own lived experience, as a young clinician, of how families actually make these decisions (which is usually wisely and with love and compassion, however the burden of these decisions can weigh heavily on them, even with strong physician guidance/recommendation) and how advance directives so rarely seem to clarify things - and so it's good to see these issues addressed in such a public way....

There are good ethical/legal and regulatory reasons to be sure to have named a proxy decision-maker or makers (i.e. formalize at least one part of that process mentioned above) as well as to 'officially' give those decision makers some sort of empowerment to say 'No' (particularly given the evolving situation in the US regarding what's required to stop artificial nutrition and hydration in some circumstances). There are some patients (although I'm convinced it's not many outside of those in the final months of life) who do genuinely wish to have straight-forward/no exceptions/no-question-about-it treatment limitations (the COPD patient who knows what it's like to be intubated and has decided never again no matter what, etc.) - documenting those wishes meticulously is obviously a good idea.

For the rest of us, who wouldn't want antibiotics, dialysis, chemo, ventilation, CPR, tube feeds if they weren't going to help restore us is some way, I can't see a way that advance directives are going to fix the problem of alleviating our loved ones of the burden of deciding when it's that time or not. Physicians and other clinicians can help alleviate some of that burden, although not all, but part of me thinks the difficulty of these decisions is healthy and appropriate to the vagaries and uncertainties of medical care for the seriously ill. Thinking about myself and what I'd want and not want - it all depends on the likelihood of interventions working. Hell I'd take an LTAC under some circumstances - but I'd also want my family to be able to say No, to be guided carefully on that, and (from the privileged position of being a physician) there are certain colleagues I'd want involved in the process - their input on what would likely be restorative or not. Again, it's a process of decision making involving trusted people that'd be important to me, knowing of course that I've already established with them general permissions to say No, to not prolong death or maintain me in a state of permanent mentally incapacitated disability....

Deactivating ICD guidelines

Continuing our intermittent practice of reviewing of treatment guidelines/consensus statements for mentions of terminal care/palliative care, a multiple-organization consensus guideline about implantable cardiac devices has recently been published in Europace (free full-text here). There is a lengthy section on ethics of device deactivation, decision-making around that, etc. It is pretty straight-forward, and treats implanted devices as medical therapies like any other, and can thus be discontinued after careful consideration like other therapies (it avoids the whole these-things-are-implanted-therefore-become-part-of-you-and-thus-subject-to-unique-ethical-analysis debate).

In addition the panel argues that continuation of ICD therapy may be indicated even in patients with DNR orders under these conditions:

• The arrhythmias being treated reflect the primary cardiac condition and not an irreversible secondary medical illness;
  
• Prompt ICD therapy confers the likelihood of added survival with meaningful quality of life and without post-arrest disabilities (e.g., cognitive); and the patient concurs with this approach.

There seem to be two distinctions being drawn here.

First if patients are dying of another condition (e.g. cancer) who also have a cardiac condition (recurrent V. fib) and who don't mind being shocked if their 'fib acts up' it may make sense to keep the ICD activated.

Second, there seems to be a distinction here between a patient having an arrest/arrhythmia which is ICD-shockable and them having a 'real' arrest (becoming pulseless, etc. - something someone would want to do CPR for). I.e. there's a difference in prognosis/likely outcome between the two scenarios: this makes sense on its face but I'm not 100% sure that that's accurate. In my experience the frequency of either of these two scenarios occurring is very small (e.g. the patient's prognosis is so short when the DNR order is being established that the likelihood of the patient benefiting from ICD therapy is negligible), but it's a big world out there and I'm sure there are cases in which this would make sense.

One thing they didn't mention, which I'm still looking for in a publication, is how to counsel families how to deactivate them in emergencies (cancer patient is rapidly dying at home; burden of transport to ED or clinic to deactivate ICD is great; family - with presumably treating physician support - wish to deactivate ICD in-situ). I get asked this from time to time, mumble something about a magnet, but never know how strong of one, etc.

(Incidentally, there was also this recent paper in Pacing and Clinical Electrophysiology, which is a survey of clinicians about practices regarding discontinuation of device-therapy - I have only read the abstract. These subjects reported that about half the time it's the manufacturer's rep who does the deactivation.)

2-month prognosis in hospitalized cancer patients; Much more

Several notable pieces from a recent JCO:

1)
First is a study about predicting 2 month survival in hospitalized cancer patients. This was a French study from 2 hospitals (n=~170) which used prospectively gathered data (laboratory, performance status, and disease characteristics such as number of metastatic sites, etc.) to predict mortality in hospitalized advanced cancer patients who weren't 'actively dying.' All patients admitted to the hospital who met the criteria were enrolled in the study (if they agreed) - these were not patients identified by a palliative care referral or anything like that. Mean age was 62 years; the patients had a diverse mix of solid tumors (no hematologic); and median survival in the cohort was 58 days (i.e. despite not being actively dying these were very sick patients).

All the typical prognostic indicators were apparent in univariate analysis (Karnofsky performance score, dyspnea at rest, low albumin, high LDH, leukocytosis, number of metastatic sites, etc.), and 4 of these 'survived' multivariate analysis: KPS, albumin, LDH, and number of mets. These 4 were aggregated into a point-based predictive model which divided the cohort into good, medium, and poor prognostic groups (really poor, worse, & dismal) for 2 month survival. Each prognostic group was well-represented in the cohort, which is welcomed since in many of these models patients with the worst prognoses often have very small representation in the initial model development (e.g. an N of 12 - here it was 63). Patients in the dismal group had a 2 month survival of less than 10%. The prognostic scoring system is quite simple and could be done at the bedside (although it's too long to describe here).

Some thoughts about this: Clearly this needs to be validated in further trials, more patients, different institutions, etc. Beyond this, I have mixed reactions to seeing these indices, of which there are numerous (although this one has some advantages - simple data, and quite a powerfully strong prediction of 2 month mortality...assuming its validity is borne out with further investigation). What do these add to clinical care? Or to a clinician's prediction of survival (which was not tested in this study)? This index could, for instance, be used to identify patients acutely in need of palliative care. However what I'm getting at is how much more help/data do we need to predict which of our advanced cancer patients are going to do poorly? That the issue in patient care is not a lack of a solid scientific basis to prognosticate but a lack of will to actually formulate a prognosis and communicate it to a patient (see previous post). Most of us in medicine are positivists (in the scientific sense) whether we'd like it or not; I'm convinced positivism underlies the EBM movement, and underlies our assumption that more data/better indices/etc. improves patient care - cases like this I'm a little less convinced. I'd welcome any comments here....

Barbot, A., Mussault, P., Ingrand, P., Tourani, J. (2008). Assessing 2-Month Clinical Prognosis in Hospitalized Patients With Advanced Solid Tumors. Journal of Clinical Oncology, 26(15), 2538-2543. DOI: 10.1200/JCO.2007.14.9518

2)
Next is one evaluating pain as a poor prognostic factor in prostate cancer. When I went through training I was taught that pain really wasn't a significant prognostic factor in cancer (although from time to time you see in crop up in univariate analyses in papers similar to #1 above). The current study in a post-hoc analysis of data prospectively gathered for a couple prostate cancer treatment trials in the 1990s (~600 men, all with castration refractory prostate cancer and who had ECOGs of 0-2). They used pain interference (from the Brief Pain Inventory) and patients with worse pain interference had a markedly worse survival (~10 months) than those with low pain scores (~17 months). My own, likely arbitrary and wrong, take on this is that it has something specifically to do with prostate cancer - more aggressive disease causing more bone pain, etc.

3)
Finally, there's one looking at sleep disturbances in advanced cancer patients, in which a couple nights' worth of polysomnography was performed on over a hundred cancer patients. There was no control group. Nevertheless the sleep quantify and quality of the subjects was quite disturbed: less nocturnal sleep than normals, more periods of day-time sleep than normal, very low amounts of slow wave sleep (believed to be the essential, restorative element of sleep), etc. Per the authors this was the first large study using PSG on advanced cancer patients and may mark the next phase of cancer-sleep research.

4)
JAMA recently had a 'clinicians' corner' piece about family requests for complementary medicine therapy after a declaration of brain death (based on a case in which just that event occurred). It's really a discussion about futility and a physician's role in providing (or not) 'futile' therapies. Given the patient in question was brain dead, and therefore legally not really a patient but a corpse (the fact that brain dead patients routinely aren't treated like corpses however highlights just how viscerally inadequate the concept of brain death is for many clinicians/families), makes the futility point in this case all the more compelling. On the other hand the traditional medicine that was to be given was in no way going to harm the patient (unless one rejects the concept of brain death), and the piece discusses in length just what physicians can and should do in such situations.

For me, the real question is not whether or not families should be allowed to administer 'futile' alternative or traditional treatments to brain dead patients (or dying ones), but in this case it's one of justice: should scarce and costly medical resources be used on dead people (to maintain brain dead people's cardiopulmonary function) at all (when there is no plan for organ donation)? A quote (I'll note however that the conclusion of the article isn't as strident as these stirring paragraphs):

Physicians generally should not agree to requests for clearly futile treatments, even when cost is not an issue, because doing so undermines medical professionalism and the supportable claims to expert authority of medical science. The physician is not an all-purpose technical extension of the patient's will and interests, but a professional committed to the good of health and the relief of suffering by the application of the medical sciences using sound clinical judgment. The terms of a physician's service are properly regulated by the ideals of medicine, reflectively endorsed and broadly conceived. Although the proper practice of medicine will be subject to lively and creative contestation along various frontiers, a physician with professional integrity is permitted, and sometimes required, to refuse to provide requested service that falls far short of medicine's regulative ideals as currently understood. Respect for the autonomy of the patient requires that a competent patient or her surrogate be allowed to refuse almost all treatments (with some exceptions for refusals that harm others), but such respect does not require the physician to administer all possible treatments. This distinction is underappreciated. ...[P]atients are not entitled to treatment that the treating physician judges to be bad medicine.

Never Extubate a Dying Patient?

Being familiar with other medical blogs is a great way to keep up on how other doctors and nurses approach care for the dying. In fact, many of the most popular posts always seem to involve frustrations of medical futility, or the emotional impact of caring for dying patients. The range in tone for these posts is quite wide, from derogatory and demeaning of patients and families to eloquent and demonstrative of the great compassion in medicine.

A recent post by the anonymous blogger, the Buckeye Surgeon, highlighted his surgeon's view of palliative care. I came across the post from Kevin MD, a popular medical blog aggregator. Here is how he highlighted the post:

"Unrushed on his journey toward death"

Well put. That should be the goal of palliative care.

Seeing a palliative care post got me pretty excited. As I read the post I was glad to see a surgeon espousing viewpoints on palliative care areas. The Buckeye Surgeon highlights how many elderly patients with very devastating injuries may be able to get to surgery but have many co-morbidities that prevent recovery. With much wisdom, it is pointed out that seeing the few who do really well should not blind one to the many who do not recover.

In reading the post, it appears the surgeon may not have access to an involved palliative care team. I am very glad to see the mindfulness of palliative care, but there are some misconceptions to be addressed.

The post highlights that terminal extubation is something this surgeon actually forbids from happening in the orders:

-DNR-CC
-Do not extubate
-Morphine 4 mg IV q 15 minutes
-Propofol drip titrated to complete sedation/unconsciousness
-Turn down the sound on all monitors.

(DNR = Do Not Resuscitate CC = Comfort Care.)

There are times when extubating a patient can cause more distress - an obstructed airway, a high risk for hemorrhagic bleed, inability to control tachypnea with medications, feel free to add others. But in my palliative care reading and experience, leaving a patient intubated is the exception, and not the rule. So I was very surprised to hear this approach of keeping patients intubated.

Have any Pallimed readers run into this with consulting physicians? My guess is probably not a lot, because these physicians may not consult palliative care as they would not want a palliative care team to extubate their patient.

Good point of using morphine every 15 minutes as that fits with the knowledge of the T-Max of the concentration after an IV dose, but it is not specified as a PRN, so is it scheduled? Many palliative care providers advocate for a combination of opioid drip and rescue bolus to anticipate dyspnea.

Instead of turning down the sound of the monitors, most have the ability to be turned off in the room and continue monitoring at the staff station. This also avoids the constant monitor watching in addition to having unnecessary alarms.

So why does the surgeon advocate leaving a patient extubated? Basically because it is more comfortable. It is explained in the post with the following passage:

...it isn't ethical to merely "turn everything off". They've decompensated beyond the stage of self-sustaining life. Unplugging everything and stopping all the drips is about as cruel a thing as I can imagine. I never terminally extubate a patient. There's nothing more gruesome than watching a patient suffocate after terminal extubation. A wise old nurse made me experience it when I was a resident. No reason to pull that tube out. The dead bowel or the fecal peritonitis is going to stop the heart soon enough. No reason to expedite the death with unnecessary agony.

I agree with the blogger that it is unethical to be cruel, but I disagree that terminal extubation has to be gruesome, cruel, or cause suffocation or agony. There are reasons to pull that tube out. Not prolonging suffering is probably the most common reason given for extubation. Not continuing aggressive measures when you can no longer reach the goals set by the patient, family and medical staff is another reason.

Euphemisms and broad generalizations about withdrawal of life-support technologies are common with families, patients and medical staff, especially for the ability to make difficult situations more tolerable. 'Pull the plug', 'turn everything off', 'take him off the hook', 'stop treating her', 'withdraw care.' One role for a palliative care team is to highlight all the things that are being done for comfort, for emotional support to patient, family and staff, to prepare for death, to conduct religious and family traditions, to reminisce.

Many palliative care providers have worked in ICU's with dying patients and are therefore very familiar with the very involved process of terminal extubation of a ventilated patient. In palliative care, extubation is elevated to a procedure not just an order written for the respiratory therapist. Terminal extubation can be done well with a team approach, managing expectations, and aggressive symptom control for dyspnea and anxiety. Check out some of our 31+ posts on palliative care and the ICU to see some studies that talk about common ICU dilemmas.

"I Wanna Be A DNR" and other Goodness from the Web

Since it is Friday, let's have a little fun. Here are some palliative care related links and highlights from the web.

A ICU Nurse and some colleagues rewrote the lyrics to the popular Nickelback song "Rockstar" to emphasize how some patients may feel in the ICU. The video itself is just the lyrics. Here is hoping she puts together more song parodies and maybe a video or two. (Hat Tip: KPW)

If you cannot see the You Tube video, then click on the post title to hear the song on the original post.


If you go to the original You Tube page, make sure to read the comments for insight on how some medical professionals feel about this song and subject.

BMJ has selected palliative care as a focus for "Making a Difference" project. This project will focus on higlighting palliative care in BMJ Journals for the next year. Hooray, more to blog about! Thanks to all that voted. (HT: JP Pinzon)

Dr. Wes comments on the general unhelpful nature of point and click electronic medical records systems for nursing notes. I don't think this is limited to just nurses, as I have seen some doctor's notes look the same regardless of the patient. Why must EMR's have so much data that is worthless? Many of the EMR's I have seen are good for data in, but not for data out. Anybody have a solution? (Thx: Kevin MD)

Psychology Today rails against the 'stages of grief' model being misconstrued again and again as a road map for how you are supposed to grieve. The article has some good points, but without some structure for beginning to tease apart such a complex phenomena and without a basic roadmap, it is that much more difficult to identify complicated grief, and figure out how best to support those experiencing it. A real Catch-22. (Thx: HFA Blog)

Also check out HFA's blog for locally oriented coverage of the Dartmouth Atlas Study. Great post!

Hospice Guy is starting to post more...Hooray! And this time he bares his soul about the Hospice Cap. Don't know about the hospice cap. Well Pallimed has not really commented on it yet, but may soon.

The anonymous Angry Pharmacist has a few choice (not safe for work (NSFW) or sensitive ears) words about the DEA and controlled substance regulation between his pharmacy and his wholesaler. Some interesting points I did not know about pharmacies hidden in the ranting.

Dan Savage, the outspoken sex-advice columnist, eulogized his mother in his column. A profound look at emotions and grief and how one single curse word can convey so much.

At the Hospice and Nursing Homes Blog, Frances Shani Parker has a great poem about the "loss" of our senses and abilities Here is a tiny excerpt:

Handfuls of August clouds
whisk you to a picnic,
hint at mashed potatoes.

Have a good weekend all! I will be off-blog for two weeks in Australia (to give a talk on the clinician's estimate of survival and meet with my CPC mentor).

I have dutifully prepared a few posts ahead of time for Drew to post for me so I don't appear to be a slacker. I am excited to leave, but also excited to come back because Pallimed has some big surprises coming up in mid-May! Any guesses?
Photo courtesy of flick.com user Vermin Inc

Morphine vs fentanyl vs methadone; More

Editor's note, evening of 4/23/08: my original post from yesterday went out garbled (a couple paragraphs were missing). I've fixed it as best I can (see the comments on this post). --Drew.

1)
The European Journal of Pain has a randomized trial comparing long acting morphine with transdermal fentanyl or methadone as the initial long-acting drug in cancer patients. This was a prospective, unblinded study of ~100 Italian cancer patients (mean age ~60 years) who had ongoing moderate to severe pain (mean baseline pain scores were 7/10) on weak opioids. (It's unclear what the baseline opioid use was in these subjects - without the paper explicitly saying so one has the impression that the group doing the study used a standard 'WHO Pain Ladder' protocol and these patients were ones who were having ongoing pain despite 'weak,' 'step 2,' opioids. Doses of at least 300mg of tramadol and 180mg a day of codeine were mentioned in the methods section.) They were randomized to 60 mg daily of morphine ER, 25 mcg/hr of TD fentanyl, or 5 mg q8hours of methadone (i.e. a methadone:morphine ratio of 1:4). Doses were then adjusted without any specific protocol (the group's own usual practice was used): for better or worse this study measures one