Wednesday, July 29, 2009
Journal of the American Medical Directors Association recently published some more data on the natural history of feeding tube placement in nursing home patients with advanced dementia. No, not a controlled trial, nor even a prospective study (of which there have been hardly any), or even a comparative study of feeding tube outcomes (of which this as far as I know is the most recent and, while small, represents one of the better studies trying to see if there are measurable differences in survival between those who receive FT and those who don't), but this study does provide some good, recent, data on the natural history of FT placement including survival and complication rate.
The data largely come from the Minimum Data Set (short story: national mandatory database of patient characteristics collected on all patients admitted to a Medicare or Medicaid certified nursing home), and includes all patients admitted to a US nursing home with advanced dementia and no feeding tube at the time of admission in the year 2000. The study particularly focuses on ~5200 of these patients who received a feeding tube within a year of their first MDS assessment (presumably then within a year of their first admission to a NH). They did compare geographic variations in FT insertion rates, as well demographic characteristics of those who received FT vs. those who didn't.
There was a shocking regional variation found in rates of FT placement nationally. The average was 54/1000 patients (per year per NH resident with advanced dementia), with a low of 2.1/1000 patients in Utah and a high of 108/1000 patients in Mississippi: yes that's a 50-fold difference. Consistent with other data, non-white NH residents were much more likely to receive FT than white patients. The way they present this data is a little weird (not immediately easily interpretable) - it's not as rates of FT insertion in different racial/ethnic groups but instead percentage of patients in each group (received FT vs did not receive FT) represented by different groups. Either way - substantial differences: 89% of the no FT patient group were white vs. 67% of the +FT group; 8% vs. 25% were black; 2% vs, 6% were Hispanic. Far fewer percentage of patients in the +FT group had living wills/POAs/DNR orders as well.
2/3 of FT were placed in the context of an acute hospitalization: most common diagnosis (based on ICD9 codes associated with the hospitalization) were aspiration pneumonia, dehydration, dysphagia, and urinary tract infection (although the most common diagnosis, aspiration pneumonia, only accounted for 16.7 of all FT placements and you get the sense it was difficult to determine from diagnosis codes exactly why the FT was placed in many of these patients).
On to the natural history findings:
64% of patients died within a year of FT insertion; of those who died within 1 year median survival was 2 months. Median survival overall (for all patients who received a tube, not just those who died within 1 year) was ~160 days. To put it another way - half the patients who received a FT had died in 5 months (and most of those within 2 months). As far as complications go, about 20% of patients needed replacements or adjustments of their tubes in the 1st year.
The 50-fold difference in insertion rates is jaw-dropping, and clear indication that nationally decisions about TF insertion in advanced dementia, whatever they are based on, are not based on evidence or a consensus about best practice.
The survival data are within the ballpark of what is known - survival is poor - and clearly FT are commonly placed in dying patients. Until there's actually a well-designed, large, prospective study on FT we're really not going to know confidently if they impact survival; even if they do however this is further indication that (in advanced dementia) overall survival is terrible anyway. When I was a fellow I was a little obsessed about this and spent several months carefully combing through the data on survival in dementia & FT to 'figure it out.' I didn't, there is no definitive data, although pretty much any way it has been looked at no one has shown a survival benefit. My own conclusion is that if it's there, it's small, at least on a population level - there are probably some patients whose lives are dramatically shortened by FT placement, and some whose are greatly lengthened.
But lately I've more wondered does it really matter? Regarding patients with advanced dementia and aspiration pneumonia - what if there was a randomized controlled trial of FT placement and it showed that median survival was 5 months in those with FT placement and 2.5 months in those without. FTs double survival! FTs for everyone! Well that's not going to happen; because for a whole bunch of people 1) living an extra 2.5 months when you are bedbound and nonverbal and unable to recognize your family members is not a meaningful/valuable medical outcome, 2) especially if it means you have to undergo a painful, invasive procedure, with complication risks, which also means that 3) you are more likely to need to be restrained/tied down to your bed to make sure you don't remove that life-prolonging tube, and 4) to top it off it also means you lose one of your final remaining pleasures - eating - including the social pleasure of having a family member or (hopefully caring) nursing home staff member sit with you, interact with you, as they feed you, 'aspiration risk' be damned.
To me, that's a crappy deal, and I wouldn't care if TF are life-prolonging (particularly if my survival anyway would be 5 months) given 2-4.
That's for me, of course. There are some patients who feel differently, who feel that artificial nutrition should be provided no matter what if there's any suggestion of nutritional impairment or compromise (the tube feeds=love camp). This is a value system I don't share, personally, but further research showing TF don't improve survival aren't going to sway that group of people as decisions about TF placement are based in values/belief and not 'data' about survival. These patients will get their TF, and that's fine.
There are of course others for whom life-prolongation at any cost (see 2-4 above for the costs) is a goal - it's this group for whom better/more robust research about TF outcomes might be helpful. Included in this group of course are many, many doctors who might not choose this for themselves but who have a very, very hard time not recommending a treatment they think is life-prolonging (even if it's not QOL enhancing, again see 2-4 above), or (better yet) actively recommending against a treatment that possibly might be a little life-prolonging because it's likely QOL worsening. I.e. - I think we need this data for us (doctors), more than anyone. So it does matter, I guess, but perhaps for the wrong reasons.
Wednesday, July 29, 2009 by Drew Rosielle MD ·
The last couple weeks' 'national discussion' about health care reform has reminded me of Winston Churchill's famous quote:
Democracy is the worst form of government except for all those others that have been tried.While this could be a reasonable reflection to make about much of the ill-informed & ideological debate that is going on (see for instance this Paul Krugman column), in the last couple of weeks the wingnutosphere has also attacked a small provision in HR 3200 which essentially says Medicare should (occasionally) reimburse advance care/end-of-life care planning conversations.
In the hysterics of our 24h news cycle some pundits/wingnuts/et al have taken this and made wild, shocking, and inaccurate remarks about it - state sponsored euthanasia, rationing care at the end of life, etc. Joanne Kenen at the New Health Dialogue Blog probably has the most complete discussion of this and I'm not going to duplicate her work in this post - read her post. I will quote from the beginning of hers, though, for a flavor of what has been said:
You may have seen the latest message tirade from the right -- health reform equals rationing equals hospice equals euthanasia.Further reading can also be found at:
Give us a break.
The House bill would encourage advanced planning. It would not mean that "old people could be visited in their homes and essentially be told, 'all right, sweetie, you have had a good life.'" It would not send government bureaucrats into homes to counsel seniors about how to cut their life short. It would not "start us down a treacherous path toward government-encouraged euthanasia."
Politifact.Some thoughts about this:
Rep. Earl Blumenauer (a co-sponsor of the provision) takes this on in a blog post here.
We try to keep the blog apolitical, and yes all the posts I'm linking to are from liberal blogs, but such is the nature of the political blogging world. You can think HR 3200 is a load of crap - fair enough - but these attacks on this provision are wrong, and corrosive to our democracy. Rep. Blumenauer's post notes that his provision is co-sponsored by a Republican, and I think this is as much to do with the nature of contemporary political discourse and the reality that, for political ends (ie to undermine HR 3200 as a whole) people will attack small provisions in it with any outlandish thing they can think of. We live in a world in which this provision (which creates a voluntary mechanism to reimburse advance care planning conversations) is represented as: "Congress would make it mandatory — absolutely require — that every five years people in Medicare have a required counseling session that will tell them how to end their life sooner." And this lie, instead of being ignored, gains major traction as it serves some political end.
As such, I'd like to dismiss this as another pathetic example of debased political rhetoric in the US. I find it hard to believe that the individuals making these claims are ignorant fools; more likely craven, pandering, political opportunists (which is no better). However these people make these claims in part because they believe they will have traction with some of the public and should give us pause as a community to acknowledge that this speaks to some portion of the public, and thus our patients. And as better end-of-life care and palliative care are being put out there as potential solutions (in part) to the US health care crisis, this is likely to escalate. Anytime it's pointed out that 'palliative care' (or discussing end of life options) saves money; that is going to be sufficient for some to conclude that this is a government conspiracy to euthanize people with disabilities and deny Grandma dialysis because she's 80. Bleh.
I say Be Out, Be Proud, Superb End-of-Life-Care for All - No Apologies! We are aided by the fact that close to no one wants burdensome treatments/hospital stays/etc. that don't improve quality of life, or frequently even quantity of life, as a terminal illness advances. Close to no one wants to spend 3 out of their last 4 months of life going in and out of the hospital, getting tests that don't help them, and getting treatments and support that will at least make them feel better sporadically, if at all**. What we do helps people, tremendously, and it's what most want (when it's time), and the fact that it probably saves Medicare a few bucks should be seen as good news by everyone.
If you'd like to weigh in on this formally, AAHPM has released an advocacy alert about it as well today, with some suggestions for action.
Thanks to Christian & Joanne Kenen for sharing much of this with me.
**I concede that this is a little idealistic, but I'll say that if you ask people how they'd want to be cared for when they were dying and there was little/nothing to be done to stop that, the vast vast majority of people would agree with this. In real life, the issue is often one of first 1) clinicians actually identifying a patient is dying and these treatments aren't going to help and then 2) communicating that to patients in a way that is understandable, and acceptable, to them.
by Drew Rosielle MD ·
Thursday, July 23, 2009
Annals of Emergency Medicine has a couple of related articles about palliative care in the ED.
First is a general discussion about PC in the ED, it's kind of a 'palliative care 101' for ED clinicians and talks about how pc skills are important in the ED setting. It also discusses HPM board certification for emergency medicine physicians.
The other article is a qualitative research study about the experiences and attitudes of emergency department clinicians about providing palliative care and EOL care in the ED. The study involved focus groups of clinicians (docs, nurses, social workers, and techs; n=26; 54% docs including residents) from 2 academic EDs in Boston, and used open ended questions about experiences with, understanding of, and attitudes towards EOL and palliative care in the ED setting.
The results are revealing, and describe deep concerns and frustrations and feelings of clinical inadequacy in these situations: lack of training in symptom management, prognostication, and communication; uncertainty about how to address conflict/unclear goals in an emergency setting; major frustration with outpatient providers about not addressing EOL care/goals/issues/treatment limitations prior to a patient's presentation as well as with systems issues to do with documentation of treatment preferences/DNR orders etc. (sort of stuff that the POLST paradigm in particular is designed to address; still requires however someone to do that prior to a patient showing up in extremis in an ED).
That last issue in particular is one that I've heard from a lot of EM physicians. Clearly the ED is the worst imaginable place to have these conversations/make these decisions. By necessity, however, it is sometimes the right place to have those discussions, but the general sense is that the providers feel not only resentment about having to do it but inadequacy. One doc noted that they find themselves second guessing what they're doing because it is so inconceivable to them that no one else had had these conversations before: “Having these conversations in the ED causes a lot of consternation. I wonder, ‘Am I doing the right thing by this person? Why hasn't somebody else talked to this person about it? Why does it come to me to end up talking to this person?'” The context presented by the first paper (discussing palliative competencies necessary for ED providers, etc.) is obviously some part of the solution but it won't change the larger/deeper issues of these conversations generally happening too late.
One last intriguing discussion in the paper is about the ED providers' reaction to hearing a definition of 'palliative care.' The definition they were provided seems to be standard WHO-ish language: 'The goal of palliative care is to prevent and relieve suffering and to support the best possible quality of life for patients and their families, regardless of the stage of the disease or the need for other therapies. Palliative care can be delivered at the same time as life-prolonging care or as the main focus of care. Palliative care is achieved through effective management of pain and other distressing symptoms, while incorporating psychosocial and spiritual care according to patient/family needs, values, beliefs and culture(s).' They mention some were surprised about palliative care not necessarily implying EOL care, but also this:
Several providers (2 attending physicians, 3 residents, 2 nurses, and 1 social worker) expressed frustration that the structured definition of palliative care seemed too broad to be clinically useful. One provider noted, “This seems more of a definition of what good emergency care should be at any given stage than specific for palliative care.”Or, in fact, what good medical care in general should entail. I couldn't agree more, and this brings up again discussions we've had on the blog before about major problems we have as a professional community about defining what we do, particularly as we define it away from (or at least more broadly than) EOL care. People 'get' the EOL care aspect. When I told my mother what palliative care was years ago her initial reaction was something like Isn't that what all doctors should do? Obviously, hell yes, absolutely, but then I started trying to describe what palliative specialists do and had a hard time. It's tough defining succinctly, without taking up a whole paragraph, what it is that specialist PC clinicians/teams do (outside of hospice-specific settings). I think this is a real problem because clinicians/clinical services which aren't used to specialist PC, don't 'get it' or whatever (see for instance last week's post about CHf), how are they supposed to understand what we do such that they know when/how/why to involve us. Especially because they read that definition and say to themselves Well I do that (or at least I know I should be doing that). And of course you could argue that 'they' often don't do that very well, or don't realize that it could be done much better, but that's not very, umm, collegial. Of course most clinicians don't have a problem consulting other specialists when they feel like they need help, which makes me wonder if the major problem is a lack of appreciation of what meticulous, patient-centered symptom management and communication actually looks like.
Anyway: my challenge for anyone reading this is to share your 1 sentence description of what specialist palliative care means and/or why it is needed? Or at least short description, if not 1 sentence.
Thursday, July 23, 2009 by Drew Rosielle MD ·
A few from BMJ:
There's ongoing coverage of the ongoing vigorous debate in the UK about 'assisted death.' First is a discussion of the political and legal debate, particularly focusing on the debate about whether family members could be prosecuted for helping loved ones pursue assisted suicide abroad where it is legal (e.g. Switzerland & the assisted suicide deaths of conductor Edward Downes and his wife within the last couple weeks - NYT article here).
Most interesting though is a commentary written by a physician with metastatic pancreatic cancer (she is supportive of legalizing assisted suicide).
I remember feeling that I had failed with a patient who was also a health professional and who was terminally ill with cancer: she had stockpiled various drugs to give her control over her time of death. Unfortunately she had a sudden obstruction of her bowel and could not therefore take the pills when she wanted to. She was therefore furious when she ended up in an excellent hospice where she survived for another 10 days—just what she did not want.She also notes that those leading the national debate about assisted death are politicians and people running hospices who have a 'vested interest' in keeping patients alive (those are not her words but essentially what she's saying). So it's finally come to this: the hospice-industrial complex is denying patients their rights because they're making money (or whatever they do in the UK) off of not hastening death. The editorial is actually well written, and overall a passionate but reasonable plea for patient's rights to do this (as in the anecdote above) and I don't mean to suggest otherwise. But this suggestion that the advocates within the HPM community against legalizing assisted death are doing so because of our 'business model' is a bit ugly.
The other paper is a qualitative look at how clinicians explore preferences for place of death with patients. This analysis comes from a study using semi-structured interviews of general practitioners and palliative clinical nurse specialists in the UK that included questions about how they explore/determine with patients place of death. It's an interesting read as a first-pass snap shot of just how ill-defined, fluid, and inadequately assessed these preferences can be. Including how the 'default' assumption that everyone wants to die at home is often not the case, at least when patients become quite ill - the wish to die at home changes to a wish to be cared for safely/not be a burden to family/etc.
The most widely reported change was a reversal of the preference for dying at home owing to the patient experiencing distressing symptoms, becoming frightened, feeling vulnerable, or becoming concerned for his or her family. There was also a tendency for patients to replace the previously expressed preference to die at a specific place (for example, home or hospice) with a desire to remain at the place where they were currently being cared for.Most interesting to me was the discussion of how they actually brought up discussing place of death. Not surprisingly a major barrier to this was the simple fact that in order to discuss PoD one had to discuss with patients that they were in fact dying which seemed to be a major barrier in this group of clinicians.
One of the aspects of these discussions which was not mentioned is the difficulty that can arise in these discussions due to family guilt. Perhaps this is a cultural difference between the US and UK, or perhaps I'm the only one who finds this to be an occasional issue which has to be confronted delicately with patients/families. 'Dying at home' is generally accepted as a virtue here, and clearly it is something that can be achieved for many patients/families. It can't for many however: family incapable or unwilling to take time off of work, to move in with the patient, emotionally or physically incapable of caring for a dying patient in a home, etc. I've had many situations in which bringing up the question of where a patient wants to die leads to them saying 'home,' which leads to them asking me can they die at home, which leads to me saying that it might be possible but would require among other things an able-bodied adult in the house 24/7 which then gives family members the pleasure of having to tell their loved one some variation of 'we cannot/won't do that' for you (and at times it really is, for whatever reason, 'won't' and not 'can't').
I try to (preemptively) normalize this - 'it's possible, but even at times for the most loving family it can be difficult to do this' or some such variation - but at times you find yourself having these conversations and you feel like you just staged a public family-abandonment scene....
by Drew Rosielle MD ·
Friday, July 17, 2009
As a change of pace, and for some lighter July reading: some academic all-star wrestling about palliative care & CHF....
Social Sciences & Medicine has a series of articles about problems with the interface of specialist palliative care with cardiology for heart failure patients (main article here; commentary here; rebuttal of commentary here).
If you're interested in palliative care for patients with CHF, or if you are an armchair sociologist, you'll find these interesting reading. (I'm the first; I fled all things that smelled like fanciful theorizin' after I left college, but I read the main article - which was written by sociologists - with some nostalgia.) For those of us unwashed by social theory (or washed then cleansed), the main article is a bizarre read and difficult to figure out exactly what is being said (at its core it involves an analysis of interviews done with CHF and palliative clinicians about the challenges in providing 'palliative care' for patients with heart failure). I thought at first it was written by clinicians, then after a few paragraphs figured it couldn't be - then read the rest of the lengthy opening section asking myself Have these people even ever seen a patient? Then they quote from interviews with clinicians (cardiologists, heart failure and palliative nurses, palliative docs) and my response was: 'Oh, these issues and concerns are very familiar to me...well said ma'am...yes, that is a frequent challenge....etc. etc.' and you ask yourself Is this what they've been trying to say?
If you read the commentary (written by cardiology and palliative clinicians) and then the rebuttal/reply to the commentary (by the main authors) you wonder if the real problem is that we're speaking completely different languages, and the main author's overly 'fanciful' (to my brutish clinician's ears) statement of their case (see some examples below) is just too obtuse for us clinicians.
Regarding my difficulty understanding where the main article authors are coming from, for instance, there's a lot of mention about how apparently 'open awareness' of death is a uniformly lauded goal of palliative care, etc. and so it's a problem with CHF patients since so many of them die abruptly. In addition, some of the language seems like fighting words, particularly if you're a palliative clinician. From the abstract:
This paper explores the continuities and discontinuities in recent policy on the extension of palliative care to people with heart failure in the UK. It focuses on how professionals in cardiology and specialist palliative care negotiate their disciplinary boundaries within the context of these policy moves. It draws out the semantic, historical and practical tensions between the core values of cardiology, with its focus on ‘living with heart failure’, and specialist palliative medicine, with its focus on ‘dying with heart failure’.(Don't let 'it's about how you live' NHPCO know they said that.)
As another example of how you read this and ask yourself what are they talking about: at one point they talk about how prognostication and therefore advance care planning is challenging in CHF (compared to cancer):
Heart failure implies an uncertain disease trajectory with slow decline intertwined with sudden acute episodes resulting in hospitalisation, where 30–50% of people might die suddenly, without an opportunity for a discussion and planning of an Advanced Care Plan....I read that and say to myself 1) seems like in fact plenty of time for ACP ('slow decline') and 2) uncertainty about time and circumstances for death and possibility of sudden decline/death without warning is in fact a strong argument for the importance of ACP. If we could foresee everything perfectly ACP would be less important.
Anyway, the core of the authors' message seems to be that palliative care is based on a cancer model of relatively predictable death which allows patients/clinicians to predict, plan, change treatment goals, and then we can all encourage patients to embrace death with 'open awareness.' While that's a highly idealized version of reality, and while I think I missed the lecture entitled 'Helping Our Patients Embrace Death With Open Awareness' during my fellowship, fair enough. CHF with its less certain disease courses, more difficult prognostication, decent chance of 'sudden death' (although if you have advanced heart failure and then have an arrest is that really 'sudden death,' really so unexpected?) doesn't fit the cancer model too well.
The interviews with clinicians talk about what you'd expect: the different specialist services at times not understanding what the others do, each having different competencies and priorities, struggling with the well-documented breakdown of any clear distinction between 'comfort' treatments and disease-modifying treatments in CHF, not knowing when someone is dying, variable treatment courses, concerns with frightening patients by talking too frankly with them about prognosis especially as we are often wrong, etc., etc. I think most of us who read this will be familiar and sympathetic to these issues, which are not restricted to the PC-CHF interface - they're all over the place - and relatively unremarkable as far as that goes.
Unremarkable, but important, and I view the important clinical challenge of these issues as a major argument for the need for specialist palliative services for patients with CHF, and why palliative care 'competencies' are uniquely helpful: sorting these things out - as well as they can be sorted out - is kinda what we do.
Anyway, the commentary is more or less a 'WTF? There is a need for specialist palliative care for CHF patients and it works pretty well!' statement.
The counter commentary suggests the physician-authors of the commentary are ignorant and don't understand the social theory & analysis in the main paper. For us armchair intellectuals the whole thing comes off as a feisty academic squabble about fancy words.
In sum, two worlds colliding, although not palliative care and cardiology but medicine and sociology. Or, just to annoy those of you already annoyed by these remarks: two disciplines separated by a common language.
Thanks to Dr. Bob Arnold for alerting me to these.
Friday, July 17, 2009 by Drew Rosielle MD ·
Thursday, July 9, 2009
Journal of Opioid Management has a tidy paper about using methadone as an analgesic for patients on methadone maintenance therapy (for heroin addiction).
The data come from a retrospective chart analysis of 53 HIV+ adults on methadone maintenance therapy who were treated in an HIV pain clinic over at least a year. (Note they only included patients who were seen in the clinic for a year, which likely pre-selects 'success' patients.) All patients were in a methadone maintenance program, and had additional analgesic doses of methadone added by the pain clinic (maintenance doses were kept the same). Patient's analgesia methadone was adjusted per routine practice at the clinic. About 44% of patients were being treated for painful peripheral neuropathies.
The mean maintenance dose was 100 mg a day. The mean starting analgesia dose of methadone that the clinic providers prescribed was 60 mg a day (divided per clinic practice tid or qid). At the end of 12 months the mean analgesia dose was ~200 mg a day. Mean pain score at the time of analgesia methadone initiation was 9/10 and was ~5/10 at 1 month and ~4/10 at 12 months (patients were also receiving other analgesics and adjuvants per routine clinic practice). The clinic did routine urine toxicology screens and about a quarter were positive for heroin (13% for heroin alone & 13% for heroin and cocaine) at 12 months (interesting; difficult to interpret without knowing what is expected/routine in MMPs). Side effects were generally acceptable.
This is by far the largest study that I know of about this topic, and while it is uncontrolled data it is still helpful in a few ways.
- Studies like this are sort of 'proof of principle' studies which underlie the idea that this practice can be done safely and effectively. Of course the patients were receiving other non-opioid analgesics, no controls, etc. etc. However, it suggests that in at least ideal circumstances (a presumably well put together pain clinic with competent providers) adding additional methadone as an analgesic to a patient's maintenance dose can be done safely and is (...at the very least part of a treatment plan that is...) effective.
- So assuming that's helpful information this sort of data also gives those of us who sometimes do this some useful information about doses etc. This group used starting doses generally ~2/3 of the maintenance dose, and frequently titrated up slowly to doses over double the maintenance dose, seemingly with good outcomes.
- The authors note that in their experience patients without addiction problems routinely need methadone doses lower than these patients maintenance doses (ie less than 100 mg a day). Many of these MMP patients ended up on 300 mg a day of methadone in this program, giving further support to the widespread clinical observation that patients with addiction problems/histories generally require higher doses than those without.
Thursday, July 9, 2009 by Drew Rosielle MD ·
An FDA advisory committee has recommended restricting acetaminophen on a variety of fronts (WebMD story here). Read the story, which is brief, for the details. Remember this is a committee recommendation, not FDA policy yet. Major points are:
- All this seems to be based in the context of the reality of too-many APAP associated inadvertant overdoses leading to liver failure.
- The committee recommending reducing the 4 gram/day max dose for adults, as well as limiting the maximum one-time dose to 650 mg.
- They also recommended discontinuing all (yes, apparently all) combination products containing APAP. The news article discusses mostly opioid combinations, and it's unclear if non-prescription combination products are targeted as well (e.g. cough/cold remedies, etc.). The basic idea, and probably most of us have seen cases like this, is that patients may inadvertantly overdose on acetaminophen if they are in a lot of pain and take more than prescribed.
Part of me thinks this is reasonable; I've pulled back for a while now on prescribing 4 grams a day of APAP. The suspicious/paranoid part of me worries this is a back-door stragegy to restrict access to opioids.
The FDA has also put a 'black box' warning on propoxyphene products, as opposed to banning them outright as had been considered earlier.
by Drew Rosielle MD ·
Tuesday, July 7, 2009
The New England Journal of Medicine reports an epidemiologic study of in-hospital CPR in older patients (65 years of age and older). The study identified over 430,000 Medicare beneficiaries who underwent in-hospital CPR between 1992-2005 to answer the question of whether survival rates of in-hospital CPR have improved over that time. They also attempt to determine which patient and hospital characteristics might predict survival.
The rate of survival after CPR hasn't changed much in the time period examined with 18.3% of all CPR recipients surviving to hospital discharge (similar to other studies). Lower survival was significantly associated with male gender (OR 0.97), age (with progressive decline in survival as patients age), Deyo-Charlson score of chronic disease burden, admission from a skilled nursing facility (OR 0.60), and race (black OR of 0.70 and other non-white races OR of 0.85).
Non-metropolitan hospitals had better survival rates, perhaps because sicker patients were referred to metropolitan facilities before they required CPR. Neither the number of hospital beds nor teaching hospital status seemed to make a difference in survival.
Overall, there were 2.73 CPR events per every 1000 admissions. This increased slightly over the period of time investigated (a timeframe which also coincides with the introduction of hospital based palliative care in the United States). Over time, the number of hospital deaths that were preceded by CPR increased from 3.9% in 1992 to 5.2% in 2005.
Neither neurologic outcomes nor quality of life data were reported for survivors. I wonder if it's possible to use rough surrogates for these outcomes such as the ICD-9 code for anoxic brain injury and CPT codes for PEG tube and tracheostomy, but that wasn't done. Furthermore, it would helpful to have 6 month or one year mortality data. The study is already chock full of all sorts of data, so perhaps I'm asking for too much or maybe some of this data will be released later.
Over time, fewer patients are being discharged home after CPR with more going to another hospital (long term acute care hospitals, likely), SNFs, or inpatient hospice. As the authors note, rather than necessarily representing poorer outcomes, this likely represents the fact that patients are being discharged quicker and sicker to other places besides home, although they don't report the hospital length of stay for patients in 1992 vs. 2005.
Some thoughts on the various factors examined:
- Age: The percentage of patients receiving CPR increased from 14.6% in the 65-69 year old group to 22.6% in the 75-79 year old group and then decreased to 7.9% in the nonagenarian group. Survival to discharge in those three groups was 22%, 19%, and 12% respectively. The 12% survival rate in the nonagenarian group seems amazing but likely represents a selection bias, as one could envision the 8% in this group who underwent CPR being the most robust physiologically for their age group.
- Patients Admitted from Skilled Nursing Facility: While this only represented 2.5% of patients, this is a major risk factor for mortality after CPR. Any patient that returns from a skilled nursing facility to the hospital should have a full exploration of their goals of care, regardless of code status. I wonder how these dismal outcomes compare to being admitted from an intermediate care facility in this population, but alas Medicare doesn't pay for that, so probably doesn't track it.
- Chronic Disease Burden (using Deyo-Charlson score): Between a score of 0,1, and 2, survival to hospital discharge didn't vary much (around 19% in each group), but then for those with a score greater than 3 it went down to 16.1%. The greater than 3 crowd is probably quite heterogeneous in their survival rate, and it would be curious to parse this out a bit more.
- Race: In this study, blacks survived to hospital discharge 14.3 % of the time compared to 15.9% of other non-whites and 19.2% of whites. Of hospital deaths amongst black patients, 6.6% were preceded by episode of CPR compared to 3.9% of white patients and this incidence has increased significantly since 1992. In the multivariate analysis, they adjusted for hospital location where blacks were more likely to be admitted and this only improved survival slightly. The authors suggest several possibilities for the lower survival in blacks and other non-whites, including concern about quality of care before, during, and after CPR. They cite research which suggests resuscitation and defibrillation might be delayed in blacks leading to a more malignant rhythm at time of CPR. It's also known that blacks are less likely to elect a DNR order, and they suggest this may play a role. Another disparity factor that was not mentioned in their discussion could be the lower rates of end-of-life discussions occuring between black patients and their healthcare providers (as evidenced by a recent study from JAGS in a nursing facility setting).
The authors reach one conclusion that will be no surprise to most Pallimed readers:
Of significant concern is our finding that the proportion of patients who died in the hospital after having previously undergone in-hospital CPR has increased during a time of more education and awareness about the limits of CPR in patients with advanced chronic illness and life-threatening acute disease.As Drew has noted here and here, we still have a long way to go in educating people about CPR and outcomes.
In 1992, the 65-90 year old population was born between 1902 and 1927 whereas in 2005, this cohort was born between 1915 and 1940. There could be a cohort effect going on here, as well, as the earlier cohort was all born well before doctors could routinely save lives with wonder drugs like penicillin, whereas those born in the 1930's were mere babes when the first case report of a penicillin pulling someone back from the brink was published. (Drew pondered the possibility of this type of cohort effect in Ireland as described here.)
Perhaps the advent of hospital based palliative care in the United States has artificially suppressed an increase in non-beneficial CPR in American hospitals? Hard to say- unless you do an analysis of hospitals who had palliative care teams for most of the timeframe vs. those that don't have them to see if the same trends are present (although, once again, one could anticipate many confounders). If not, we can still hope to stem the tide in the future.
Since some elderly patients DO survive CPR with good neurologic outcomes, I'll continue to hope for more research that helps identify those that will benefit most from it so that we can be more selective in our application of resuscitation measures. And it's probably appropriate that a certain percentage of deaths are preceded by unsuccessful CPR, but is 5.2% the right number? Unless we can come up with some new-fangled bedside instant analyzer that tells us prognosis right before we start compressions, it will remain a crapshoot and we can just hope to avoid CPR in those patients where CPR is certain not to meet their goals.
Tuesday, July 7, 2009 by Lyle Fettig ·
Richard Knox is an NPR science reporter who wrote a compelling account of the challenging end-of-life decisions he and his family faced when his father died. I read the first several paragraphs before I looked at the top of the article where it mentions that this piece was originally published in 1989 in the Boston Globe. Twenty years later, the story retains its relevance to the national end-of-life conversation and serves as a nice supplement to the study about CPR outcomes mentioned above.
Richard's father, Albert Knox, was 78 year old who had a history of emphysema (not oxygen dependent) and local prostate cancer for which he'd been undergoing definitive radiotherapy in an attempt to cure it. Richard receives a call one weekend from his stepmother telling him that his father's kidneys and liver are failing and that the doctors suspect his prostate cancer has metastasized but a CT scan isn't available until Monday. Richard tells his stepmother to have the doctors "do whatever is necessary" until they find out what's going on. He then strikes to the heart of the matter:
Behind the emotional turmoil, I make a mental note: In Florida, where death seems as much a part of the environment as mildew, doctors and nurses seem to expect families of terminally ill patients to "let them go" rather than fight. I have no quarrel with that. The issue for us is: What is "terminal"? And when?Step 1a and 1b in helping a patient and his family with end-of-life decisions should be to develop as much diagnostic and prognostic certainty as you possibly can (easier said than done in many cases). As it turns out, the CT scan doesn't reveal cancer, and Richard concludes that his father still has no "terminal" diagnosis. The physicians eventually conclude that pyridium (which Mr. Knox used for dysuria after prostatectomy) was to blame for his renal and/or hepatic failure. Over the coming weeks, his multisystem organ failure progresses, he develops DIC, respiratory failure, an arrhythmia, coma, ischemic toes, and undergoes successful CPR not once but THREE times.
The course is also complicated by a number of diagnostic, prognostic, and therapeutic dilemmas/misjudgment, all presenting as communication snafus (although Richard seems to give most of the physicians the benefit of the doubt):
- A nephrologist offers "a spot" of dialysis, to which Richard agrees, but then 10 minutes later she calls back and tells him that it would be too risky because of the bleeding risk.
- The hospital's only cardiologist wants Mr. Knox transferred to Orlando for more extensive electrophysiological testing, but then after the admitting physician and Orlando cardiologist reach a consensus that this transfer would be too risky, the local cardiologist childishly dismisses himself from the case (abandoning the patient). He invites himself back onto the case later after a 90 minute conversation with Richard one evening (about God knows what?).
- A neurologist mistakenly concludes that Mr. Knox is in a persistent vegetative state at one point.
"I know you have trouble seeing it from my point of view," Tommie says. "You're young. You have a lot of life ahead of you. But he's 78. He's had a good life and he'd be miserable if he couldn't be the man he was. He wouldn't understand. He wouldn't understand what has happened to him. You have to understand, Dick: I'll take him back in any condition and I'll give him the best care I can. I want him to survive! I love this man! I've loved him for 24 years! But I'm not going to do anything more to help him survive if he's going to be miserable - and Lord, would he be miserable! Is that clear?" It is. I know she's right and I assent. The "Do Not Resuscitate" order stands. But it will take me a couple of days to make my peace with the decision. And of course, the order may be moot. He may surprise us all again and survive.I'll let you read the touching conclusion. It includes the patient having a period of lucidity. From the story, it's unclear whether any physicians spoke with Mr. Knox himself about the decisions at stake.
In these types of cases, patients cross a blurry line the patient's goals of care are unlikely to be met, regardless of interventions offered. Mr. Knox appeared to wish for a certain quality of life that was not likely to be achieved after a certain point in his case. When that line appears to have been crossed, aggressive, invasive interventions should not be provided. The challenge for providers (and families) is to know where each patient's "line" is and whether it has been permanently crossed. This requires providers to a) discuss early and often what the patient's goals of care are and b) adequately prognosticate what the patient's likely survival will be BUT ALSO what the likely quality of life will be in that survival.
There has been a lot of talk lately about the specter of Medicare "rationing" at the end of life. Most of it is framed in a negative manner (without a realization that Medicare already deliberately rations care intentionally and inadvertantly based on what is and isn't reimbursed). "Bedside rationing" (a physician withholding a beneficial intervention because of the cost to someone else besides the patient) is unethical. However, if you look at cases like this, there's a significant opportunity for providers to unintentionally ration care merely by identifying patient goals and stopping/withholding burdensome, expensive therapies that won't meet those goals. This is appropriate rationing that is patient-centered. That is one of the reasons why palliative care needs to be an integral part of healthcare reform.
In the article's sidebar is a description of the strengths and weaknesses of living wills. Most states' living will forms would have likely been inadequate to help with the decisions at stake in Mr. Knox's case because of the question of whether he was "terminally ill." They rightly suggest that naming a durable power of attorney is a better strategy to ensure your preferences are honored. However, even that strategy has weaknesses (surrogates may accurately predict patients' wishes in only about 2/3 of cases and this strategy still requires providers to communicate well with the DPOA).
by Lyle Fettig ·
Thursday, July 2, 2009
Annals of Oncology has a paper trying to look at whether palliative sedation is associated with shorter survival. It's a prospective, multi-center, single-country (Italy) study which prospectively matched ~270 cases (cancer patients admitted to hospice units who received palliative sedation) with similar 'controls' (similar cancer patients admitted to the same hospice units during the same period). Controls were matched for gender, age class (less than 65 and greater than 65 years), reason for admission (psychosocial, uncontrolled symptoms, and terminal phase), and Karnofsky performance status (KPS) subdivided into three classes (10–20, 30–40, and 50 or more). Patients who received PS did so based on standard practice by their treating physicians; there was also no standardization of PS treatments.
As you'd expect by the design patients were well matched; even though not deliberately matched the two groups ended up having similar Palliative Prognostic Scores, and so should have had grossly similar survival.
They admit that there are a variety of practices which fall under the umbrella of 'PS' and as far as I can tell they included anyone in PS group who received anything which the treating physician labeled as 'PS.' Along those lines, only 25% are described as receiving 'continuous, deep' sedation (ie what historically was described as 'terminal sedation'). There is a confusing array of data presented (some patients receiving mild sedation, others intermittent, some continuous but not deep, a whole variety of meds involved including opioids, etc.).
About 80% of patients received PS for delirium/agitation, with the rest being dyspnea and pain (and 6% for psychological distress only). The survival curves of both groups were identical (median survival in the 10 day range). They did not present separate data for just the 'continuous/deep' sedation group (and their controls). Cessation of artificial nutrition or hydration was not measured.
Their conclusion (from the abstract): "PST does not shorten life when used to relieve refractory symptoms and does not need the doctrine of double effect to justify its use from an ethical point of view."
Some thoughts here.
1. While I may think their conclusion is correct, that's not because this study particularly supports it. Most of the debate about PS has been about 'continuous/deep' sedation/'terminal sedation': essentially deliberately inducing a pharmacologic coma (state of unresponsiveness), with the intention of maintaining that coma until death (usually, although not necessarily, accompanied by cessation of other life-sustaining medical treatments including artificial nutrition and hydration). Only a quarter of these patients, apparently, had this flavor of PS, and we aren't presented with a separate analysis of these patients. Without doing that this is like arguing that light, intermittent sedation doesn't hasten death but that's not really a burning clinical or ethical debate currently.
2. This is a group of patients with a median survival of ~10 days. Even though this is a relatively large study, unless any intervention had a major impact on mortality demonstrating a difference in survival is nearly impossible. If they had given all the PS patients 1gm of pentobarbitol and a bucket of succinylcholine and found that median survival in the 'active' group was 5 minutes vs. 10 days for the controls that'd be one thing but this is not. The real point here is imminently dying patients are imminently dying patients and we're never, ever going to show a mortality difference between PS and non-PS groups of those patients. This sort of study design would be the way to do it - a randomized controlled study trial could not happen for ethical reasons. You could fancy this study up with a more elaborate propensity score matching process, etc. but it'd be essentially be the same study design. It's not going to show any difference however.
3. Is there a real, significant ethical question to be answered about continuous/deep sedation given for intractable symptoms in otherwise imminently dying patients? And is it in fact an important question to even be asking/worrying about - the potential for shortened life? Assuming CDS-PS is used as a last resort (ie nothing else has worked adequately, leaving aside questions about what that might actually mean) it seems the available therapeutic scenarios we have are:
- Staying the course: patient dies with uncontrolled suffering in ~10 days.
- CDS-PS without any life-prolonging medical care: patient dies peacefully in 10 days and yes, perhaps it's possible they would have lived 11 days without CDS-PS, or hell maybe we could have made them even live longer like a 12 days or 3 weeks if we mechanically ventilated them, put them on pressors, threw in some CVVH, and even tried a little ECMO.
- Actively hastening death: applying novel medical interventions with the intention of ending life/shortening life; patient dies in less than 10 days with, well, no more suffering subsequently.
I should not be naive: there are of course plenty of people for whom the thought of potentially 'hastened death' (really it's 'not-prolonged death') via deliberating sedating patients or using meds with sedating side effects is troubling. Research like this can be reassuring which is a good thing. I'm arguing however is that what is 'really' needed is not reassurance that these practices probably don't influence survival but engaging with clinicians who have these concerns about the fundamental issue: that it's ok not to prolong dying, that a peaceful, comfortable death should be the preeminent treatment goal when someone is dying and we don't need to twist ourselves into ethical knots about it.
4. The real ethical question about CDS-PS is whether it is an appropriate option for patients who aren't imminently dying (and I'm not going to define exactly what I mean by that), including for patients who have intractable psychological and existential suffering. In these cases, CDS-PS is almost certainly life-shortening and the question is is that acceptable? How much 'life-shortening?' How much suffering? This is a question that can't be answered by research.
Hat tip to Lyle for his thoughtful comments about this post.
Thursday, July 2, 2009 by Drew Rosielle MD ·
CA has a nice review, directed at oncologists, about discussing prognosis with cancer patients, with a particular focus on end of life care planning/hospice decisions/etc. Has a lot of practical language examples. Good one for the teaching file.
Gerontologist has a qualitative study about hospice in the assisted living setting. It involves semi-structured interviews with ALF staff members and caregivers about death & hospice in ALFs. It thoughtfully discusses some of the barriers, particularly given that ALFs are designed for stable, somewhat independent individuals which does not describe most hospice patients, at least in the final weeks of life. I thought this section was quite notable:
Rather, if an ALF was committed to providing EOL care to a particular resident, the staff went far above and beyond the usual level of care provided to other residents or described in their policies. The ALFs provided much complex care such as assistance with all activities of daily living, increased monitoring of symptoms, rapid and frequent changes in medications, skin care, mouth care, and emotional support. Two factors, the length of time the resident had lived in the ALF and whether they were well liked by the staff, were consistently associated with whether the ALF would support the resident’s staying in the ALF as levels of care need increased. The more ALF staff knew the resident and liked them, the more likely they were to bend rules or go “ above and beyond ” in trying to facilitate dying in the ALF.Which is admirable, and the right thing to do of course for those patients. However this is the problem: ideally one should not need to rely upon the good graces/dedication/love of your ALF staff in order to be able to stay in you ALF home until death. The way ALFs are structured/staffed now however this is the case and it puts many patients in a position of having to leave home to die. Of course many 'home-home' dwelling patients need to do that as well, and it's not the fault of ALFs that this is the case; they weren't designed for this. Anyway - the paper discusses all of this in detail.
Chest has a review about pain management in ICUs, specifically in end of life settings. It's actually a much broader overview of death in the ICU, cultural issues, caregiver issues, etc. Not too specific about pain management itself, but worth a read for the larger issues it discusses. E.g.:
Although the relief of suffering for patients in the critical care setting is of prime importance, suffering experienced by their family members and those engaged in caregiving also deserve attention. Of 906 critical care nurses surveyed about their experiences with ICU patients at end of life, 78% thought that dying ICU patients frequently (31%) or sometimes (47%) received inadequate pain medicine. Nurses who understood the principle of double effect (98% of 906 surveyed) agreed that administering analgesics to decrease patient pain, even though there might be an unintended consequence of hastening death, is an ethical way to treat a dying patient. Yet other nurses have identified lack of adequate pain relief for their patients as one obstacle to providing good end-of-life care,and they believe that effective symptom control is a prerequisite for a dignified death. When nurses provide care that does not relieve their patient's suffering or when they follow orders for pain medication even when the medications prescribed do not control the patient's pain, they are at high risk for suffering moral distress. ICU nurses can be prepared with the knowledge and skills to make decisions about patients' analgesic needs and be provided guidelines or protocols that will assist them in making analgesic treatment decisions. If they are provided the time necessary to titrate analgesics according to the patient's response by being relieved of some of their other responsibilities during this period, their contributions to patient comfort may increase while their vicarious suffering decreases.
by Drew Rosielle MD ·
Christian gently reminded me, albeit a few weeks late, that we missed our 4th anniversary (June 8th). So I thought that I'd note it anyway.
I continue to be amazed by the reception of the blog, and the support, humor, and wisdom of our readers (& their comments) over the years. So thank you, keep telling your friends and colleagues about the blog, and keep letting us know how we're doing (with both positive and 'constructive' feedback). You know how to find us.
Last year's highlights (via Christian's datacloud in the sky):
- We had a steady growth in visits of about 70%: ~72,000 in 2008-2009 vs. 42,000 in 2007-08. We had a similar increase in our pageviews: 115,000 vs 69,000 in 2007-08.
- Growth in subscribers: we had 675 total subscribers in June 2008 and 2146 in June
2009 including over 450 on Twitter. (Some are inevitably duplicates but some
are new audiences we never reached before.)
- We had 542 comments since last June
- Expanding the family of blogs into Arts & Cases: Amy & Amber have clearly hit a nerve in particular with their Arts blogging.
- AAHPM gave us an award, which they haven't retracted despite the fact that Christian, Tom, and I unceremoniously stormed the podium prior to Russ Portenoy finishing introducing us. And he called Tom a 'young man' - making it a double smile day for Tom.
- Christian, a man of many plans, got the blog integrated with Twitter & Facebook, Twittered AAHPM (along with many others), tried to start some sort of Twitter FDA revolution, and got interviewed in the NYT and almost got the blog mentioned by name in it.
- And we invited Lyle to join and have patted ourselves on the back every day since for doing it - glad you're here Lyle.
by Drew Rosielle MD ·