Pallimed: A Hospice & Palliative Medicine Blog

Methadone on Methadone

2009-07-09T14:40:00.000-05:00

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.

FDA on APAP & Propoxyphene

2009-07-09T14:38:00.000-05:00

1.
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.

CPR in Older Patients

2009-07-07T14:37:00.001-05:00

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 lament the lack of improvement in CPR outcomes over time and wonder whether it's because we haven't gotten any better at ACLS in the hospital or if we really have but there's a confounder present that makes it look like we haven't. They ponder whether the nature of acute illness has changed towards illnesses that respond less favorably to CPR. Other confounders could include an increase in age and chronic comorbidity level amongst those receiving CPR, but the change in these over time was not reported.

The authors reach one conclusion that will be no surprise to most Pallimed readers:

Of significantconcern is our finding that the proportion of patients who diedin the hospital after having previously undergone in-hospitalCPR has increased during a time of more education and awarenessabout the limits of CPR in patients with advanced chronic illnessand 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.

What To Do The Next Time Dad's Heart Stops

2009-07-07T14:30:00.002-05:00

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.

Eventually, after the last resuscitation, the nephrologist recommends a DNR, but the cardiologist intervenes and recommends a "partial code," wanting to do CPR and defibrillation if necessary without intubation (an approach that's rarely successful in this type of circumstance). Richard leans towards the "semicode" approach as it's presented to him. But finally, we get some much needed information that hints at Mr. Knox's "goals of care" (it's almost like this was deliberately not mentioned until towards the end of the story because the doctors never asked about it). Richard describes his father as having "no patience with being a patient" at his age after a lifetime of "fierce independence" and imagines his reaction to the prospect of needing amputations for his gangrenous toes. The patient's wife, Tommie, lends some frank clarity:

"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).

Palliative sedation and shortened survival

2009-07-02T19:45:00.001-05:00

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), andKarnofsky 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 refractorysymptoms and does not need the doctrine of double effect tojustify 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.

My point in throwing about ECMO in #2 there is to point out that in imminently dying patients questions of life-prolongation are really very secondary/unimportant (ideally speaking). If CDS-PS was shown to, let's say, halve survival from 10 days to 5 days, I would hope that no one would care. If they did, I'd ask them why not then string patients along a few more days on the vent then if what is most important is scraping a few more days of organ perfusion out of a dying patient's life?

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.

Palliative Care Grand Round July

2009-07-02T19:41:00.000-05:00

Tim Cousounis at Palliative Care Success has posted the July edition of Palliative Care Grand Rounds. Go check it out and some of Tim's other posts for some insightful views on the future of palliative care organizations.

Pall-Pourri: Some reviews; Death in ALFs

2009-07-02T19:30:00.000-05:00

1)
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.

2)
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.

3)
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.

Pallimed's 4th Anniversary

2009-07-02T19:20:00.000-05:00

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.

So a good year. Thanks for reading and hope the next year is as good.

CAPC FDA opioid petition

2009-06-26T12:51:00.004-05:00

Sorry about the extra post, but....

The Center to Advance Palliative Care (CAPC) is circulating a petition (originating from the American Pain Foundation) to urge the FDA to protect the rights of people with pain regarding access to opioids, as the REMS process unfolds.

The text of their press release/call to action:

As you are probably aware by now, the U.S. Food & Drug Administration (FDA) is currently working with makers of long-acting opioids to develop a plan to reduce opioid diversion/illicit use. This plan is known as Risk Evaluation and Mitigation Strategies, or REMS. The FDA is currently accepting comments from the general public until June 30, 2009 surrounding this issue. You should know that some of the comments the FDA has received have called for an outright ban or moratorium on certain opioid pain medications.
CAPC is distributing a petition created by the American Pain Foundation in order to help facilitate your response to the FDA. Please sign this petition TODAY to help make sure that patients in pain continue to have access to effective pain care, including prescribed opioid medications. Your voice and the voices of other pain advocates are needed to remind decision makers that the lives and livelihoods lost to pain are worth no less than victims of drug misuse or abuse. The FDA needs to hear how vital access to these medications is to people with pain and what tragic results could occur if they were denied access to these medications or if additional barriers were created making access more difficult for people who are legitimately prescribed these medications.

Petition here.
CAPC page about FDA action/REMS here.

Lancet editorial on euthanasia & choice

2009-06-25T16:30:00.000-05:00

Lancet has an editorial about euthanasia (by a palliative doc and UK Member of Parliament**) and the shift in the UK debate about euthanasia from 'relief of suffering' to 'patient choice/control.'

It begins provocatively:

“I have never seen such a clear cut case for euthanasia” were the general practitioner's words when he referred to me a young man with a fungating malignant spinal tumour. The patient's distress was palpable and compounded by neuropathic pain. But, most of all, he hated losing control through creeping paraplegia and through his increasing dependence on his young wife, who was struggling to cope with their two children and 7-week-old baby. He asked me to end it for him, and his request persisted for several weeks. He would have passed all the tests about mental competence that euthanasia campaigners suggest and appeared to fulfil all the criteria in legislation from other countries: he was terminally ill with a short predicted prognosis, suffering unbearably, persistent in his competent request, fully informed, and had no psychiatric condition.
That was 1991. In 2001, he telephoned me to say that his beautiful wife had been diagnosed with pancreatic cancer. She died some months later, and he has brought up their children alone, aware that the law in Britain had saved them from being orphaned. Yet the media campaign for legalising what is euphemistically called “assisted dying” rarely shows this side of the coin.

The rest of the editorial discusses a renewed focus within the UK debate on choice/control. It's an issue we've discussed before on the blog, and in some ways reflects, at least in my opinion, a focusing of the debate onto the issues that most drive requests for/interest in assisted death (assisted suicide and euthanasia) where it is practiced: it is not actually used as a last resort option in patients suffering intractably (at least physically). Palliative/terminal sedation (let's leave aside debate about what term to actually use) is used in these scenarios (generally speaking - even in the Netherlands where both TS and AD are practiced it seems TS is generally used to treat active/current intractable physical symptoms like pain, dyspnea, restlessness). Assisted death, generally, is sought by those who wish to control the circumstances of their death, and are worried about future indignity, loss of meaning, and symptoms.

So actually framing the debate this way seems to me to be, at the very least, honest, and for it or against it I think it is appropriate to at least have the discussion about assisted death in the context that in real life it is not generally used for the relief of active (somatic) suffering but for more existential reasons around loss, control, etc. To rephrase: the actual debate about it should less be about whether it is necessary to have access to euthanasia as a way to 'treat' intractable suffering and more about patients' rights to have medically-assisted deliberate hastening of death for (the complex of interrelated concerns around control/loss/dignity that I'll paraphrase as) 'existential' reasons.

While absolutely acknowledging that this is indeed why most patients seek assisted death, the author is concerned this shift in the rhetoric/justification for euthanasia/assisted death is tied with a (what she states is at least for some an intentional) de-linking of assisted death from terminal illness itself. And, apparently, this is happening. She discusses some draft proposals being tossed around in the Scottish Parliament:

Her consultation document, intended as a prelude to a bill in the Scottish Parliament, proposes to legalise euthanasia not only for people who are terminally ill but also for others “enjoying otherwise satisfactory health but with degenerative, irreversible conditions”, for “patients who unexpectedly become incapacitated to a degree they find intolerable”, and to people “who are not terminally ill, suffering from a degenerative condition, or unexpectedly incapacitated but who find their life to be intolerable”. These wide-ranging proposals seem a natural consequence of the shift in emphasis of the pro-euthanasia campaign from the relief of pain and other symptomatic distress in the dying to an agenda based on personal choice and control.

I have written on the blog before that I'm essentially against the legalization of 'assisted death' practices (physician assisted suicide and euthanasia) as for me I do not think that loss of meaning/choice/control are sufficient reasons to have medical assistance with dying. I understand why people (at least a substantial minority if not a majority of Americans) are for the legalization of assisted suicide. One of the leading proponents of its legalization once told me that we can say all we want about the effectiveness of palliative care and, if needed, palliative/terminal sedation, but many patients just don't trust us to be there for them. I also think about what my patients go through sometimes and ask myself 'Yikes, would I really go through that myself?'

For me, thouth, it's about the role of medicine in these scenarios - is this loss of meaning (or however you want to describe the existential issues at play here) and desire for control the domain of medicine or not? Something which should be 'treated' medically? I basically come down on the side of 'No.' Acknowledging that I do treat this 'medically' all the time of course, with antidepressants for 'depression' even at times when I suspect it's not this organic brain disease called 'depression' but Something Else; or with benzodiazepines for 'anxiety,' etc. This is perhaps hypocritical, and makes me wonder if I've decided that it's not that it shouldn't be medicalized, but that it shouldn't be medicalized 'in that way' so to speak.

Regardless of this, I do think it's possible to have this debate and not de-link assisted death with terminal illness. I accept that this delinking is happening but don't think it is inevitable....

These issues aren't going away, and am interested in what others have to say about this.

**Sounds like a good combo to me and something we should try stateside. Hmmmm...Diane Meier?

NEJM on for-profit hospices

2009-06-25T15:56:00.002-05:00

Briefly - this week's NEJM has a report about hospice trends (free full-text here), focusing on issues to do with extended hospice lengths of stay, payment, and concerns that for-profit hospices are gaming the system a little (that language is not used, but implied). It doesn't directly mention 'hospice cap' issues but clearly those issues are relevant to the article. Mostly it summarizes MedPAC's recent recommendations and the impact implementing them could have on hospices.

A quote:

The increasing proportion of lengths of stay exceeding 180 daysand the variability in length of stay among hospices also convincedMedPAC that Medicare should change the manner in which patientsare recertified for eligibility. After being deemed eligibleby two physicians, one of whom is the hospice medical director,beneficiaries elect hospice care for defined periods, the firstof which is 90 days. After a second 90-day period, patientscan be recertified for an unlimited number of 60-day periodsif their life expectancy remains 6 months or less. But afterinitial approval, recertification falls solely within the purviewof the hospice's medical director, not the patient's physician.In an effort to improve adherence to the coverage criteria indetermining eligibility, MedPAC has recommended requiring documentedphysician oversight as well as additional medical review oflong stays at hospices with a disproportionate number of suchstays — to "identify providers with inappropriate admissionsor recertification practices."
MedPAC also recommended that the Office of Inspector Generalinvestigate the prevalence of financial relationships betweenhospices and long-term care facilities "that may represent aconflict of interest and influence admissions to hospice" andexamine the enrollment practices of hospices with patterns ofunusually long or short stays.

CPR understanding in hospitalized patients

2009-06-23T09:55:00.000-05:00

Journal of Medical Ethics has an article about hospitalized patients' understanding of and attitudes towards code status discussions (see also this blog post about a similar study). The study involved interviewing ~140 newly hospitalized patients (median age 48 years, 92% white, over 80% had were expected to live more than 2 years according to their treating physician) about their understanding of and attitudes toward CPR, code status orders, etc. Among other things they were asked what they thought the survival was for in-hospital arrests; they were then told it was about 15% survival to discharge and were asked if that changed their preferences for wanting CPR, etc.

Patients had very poor understanding of CPR and its outcomes. About 30% of patients recalled having a discussion about code status during the hospitalization. Most patients noted that they thought they knew what CPR meant and entailed. 68% knew it meant chest compressions however only 27% knew it could involve defibrillation and only 7% mechanical ventilation. About 90% of patients (including the oldest group) said they would want all 3 (of note when they describe the situation they describe it as one in which 'you are dying').

Overall patients estimated survival to discharge after an in-hospital arrest to be 60%. After being told actual expected survival is about 15%, 9 patients said they were less interested in CPR. After being told expected survival to discharge with 'good brain function' was about 7%, 25 patients said they were less interested in receiving CPR.

8% of patients had code statuses which did not reflect their stated preferences; 2/3 of whom were 'full code' and didn't want to be. They noted that over 80% of patients said they thought it was good to talk about CPR outcomes. Only a few percent said talking about CPR made them uncomfortable. About a quarter of patients said they had living wills/advance directives; less than 5% of patients had them in their chart.

While they did collect data about physician estimation of prognosis, they do not mention if they compared that with patient preferences or anything else.

This is another solid reminder of how little patients actually understand about CPR - both its 'methods' and outcomes, and that we should take nothing for granted when discussing it. It also indicates that discussion of outcomes does change some patients minds, although a relatively small percent overall (fewer than this landmark study, although that one involved a much older patient population, and asked questions in the context of a patient's long-term survival as well). The fact that these were young and relatively 'healthy' patients probably is what leads to these results, especially compared to the older study: if you are 48 years old, expecting another 20-40 years of life, a 15% chance sounds pretty good. If you have a progressive, life-limiting disease, with a short overall survival (e.g. likely less than a year) the benefit:burden profile looks much different (aside from the reality that in those patients 15% is probably a generous figure).

Tweeting a palliative work-week

2009-06-23T09:43:00.003-05:00

Dr. David Weissman (the founder of the program I'm at) is tweeting an account of his work-week on a palliative care consultation service. He started yesterday, and is mincing no words.

His Twitter profile name is dweissma.

Zen Buddhist Chaplains at Beth Israel Medical Center

2009-06-20T13:00:00.010-05:00

The LA Times has a piece that describes a Zen Buddhism chaplaincy program at Beth Israel Medical Center in New York. Through this program, more than 20 Buddhist chaplains or chaplains in training provide spiritual care to the hospital (including patients, families, and employees). The article starts with a familiar scenario-- a man with lung cancer and cirrhosis who wishes to remain a full code. The authors use this scenario to dive into a main theme of the article: the tension between "alternative therapies" and traditional medicine. The Zen chaplain expresses a wish to disclose his past battle with alcoholism to the patient with hopes that this might lead to conversation that helps the man prepare for his death. A physician hints that this might not be appropriate to do. A psychologist indicates that this disclosure might not be appropriate for some providers, but perhaps okay for the chaplain to do.

The article further describes the tension between allopathic medicine and the program. One of the chaplains talks of "culture change" they hope to bring to medicine but later also discusses his hope that their methods might lend to the endpoints with which physicians are concerned (e.g. one suggests that alternative therapies may improve adherence to a diabetic regimen rather than providing a competitive alternative that detracts from the regimen's benefit). A physician who cares for the patient remains unconvinced.

Certainly, I could envision some of the tension described in the article, especially if there are circumstances when chaplains might recommend to non-compliant patients to pursue alternative "disease modifying" therapies versus medically proven treatments. I suspect the level of conflict between physicians and the chaplaincy program is overplayed for the sake of good storytelling, though.

I'd guess that physicians at Beth Israel have mixed feelings that are not adequately represented by this article. For instance, I'm ecstatic this program exists to explore and support the spiritual needs of patients from a unique perspective, ambivalent about the method of self-disclosure that the chaplain proposes in the case of the patient with lung cancer, and a little concerned that someone might recommend seeing an herbalist for poorly controlled diabetes. (The article only infers what the chaplain might be suggesting, and I'd like to hear more about how he thinks a referral to this clinic might support patient adherence.) I'd guess many physicians would respond to this type of program with indifference. What do you think?

The tension described in the article is a familiar one to palliative care providers. Even within the profession of medicine, philosophies and approaches of providers may conflict. One of the main challenges for palliative care providers is to champion the principles of our profession while at the same time helping other providers to see that those principles are not always in conflict with other important principles of medicine. There is a similar struggle described in this article.

Regarding self-disclosure, I'm certainly willing to entertain the psychologist's proposition that it may be okay for chaplains to self-disclose, realizing that there are risks of doing this (for example, the risk of transforming the encounter into a self-therapy session that detracts from the patient's therapy). Pallimed covered physician self-disclosure in 2007. I am curious to hear from chaplains of any denomination about the topic of self-disclosure, and wonder if there is something in particular about the Buddhist mindset that makes self-disclosure less risky and more rewarding for the patient. The author of this article seems suggests that the chaplain who wishes to apply this method "operates under different rules," but it's not described how this relates to Buddhism per se.

While the program is a general chaplaincy program not strictly focused on a palliative care population, it appears to have the support of at least one member of the palliative care team:

Supporters of the Zen chaplains program say the monks' presence brings a calming influence to the often frenetic hospital floors, and that patients, for the most part, are open to them. "I think a lot of it has to do with the fact that a lot of our patients don't really know what a Buddhist monk does," said Terry Altilio, a social worker in Beth Israel's palliative-care department, which focuses on relieving suffering of seriously ill patients. "For a lot of patients, there's a curiosity and an openness you don't necessarily see with rabbis, priests, etc."

This certainly rings a cord with my experience. Our team has a "spiritual adviser" rather than a chaplain, which does seem to help some suspicious patients keep an open mind about her role in their care (a role that is from a non-denominational, non-proselytizing stance). Speaking of non-Buddhist chaplains, some will take issue (rightfully) with the portrayal of "typical" hospital chaplains as somewhat feckless when it comes to difficult issues such as confronting death. As with any discipline, you'll find that some chaplains are more comfortable with these topics than others.

Lastly, picture #7 associated with the article made me dream about having a scalp massage each day at about noon (and q 3 hours prn afterwards).

Chest articles on miracles and spirituality/religion in health care

2009-06-20T12:30:00.000-05:00

Chest recently published two articles about spirituality and religion in the care of hospitalized patients:

1) The first article discusses an approach to families who "expect miracles" in patients with very poor prognoses in the ICU. The author attempts to juggle the need to support surrogates' spiritual and emotional needs (as well as their substituted judgment) with the physician's obligation to avoid non-beneficial treatments when possible.

After a case presentation of an elderly woman who has multisystem organ failure, the author establishes a rudimentary differential diagnosis for the circumstance where a family brings up the possibility of a miracle. The differential listed includes:

Hope/faith (trying to maintain a positive attitude in the face of an admittedly poor prognosis).
Denial (due to lack of understanding about prognosis and/or reaching a different conclusion than the health care team about prognosis).
Let's further parse out the "reaching a different conclusion about prognosis" etiology: This could be related to past family experience where the patient or another loved one made a seemingly miraculous recovery, but could also be related to mistrust of the health care team.
A mechanism of control for family in the face of anger, disappointment, or frustration over some aspect of care.

Hopefully, in the process of an organized family meeting, emotions such as anger (and their root cause) will be identified and acknowledged in the process of eliciting family concerns, perhaps even before the family expresses hope for a miracle. I had not previously considered these emotions (directed at the care providers) to be a cause for a miracle statement. In fact, based on my observations in the ICU, families who seem to clearly understand the poor prognosis and who don't expect a miracle seem more likely to express anger about the potential of mismanagement, late diagnosis, etc. (In other words, "we know what's going on, it's awful, and right now we need someone or something to blame because it's so awful" regardless of actual fault.) This is by no means a general rule and not based on any research--I can certainly recall families who have expressed both anger and hope for a miracle. Furthermore, these negative emotions in general (even when not directed at anyone in particular) are a likely prompt for a miracle statement.

The initial inclination for many practitioners is to tackle the miracle statement on an intellectual level, refuting the possibility of a miracle. The author correctly recommends clinicians avoid this approach. As he states, this approach will only alienate families. Why? Besides being a generally adversarial approach, it does not deal with the emotions underpinning the miracle statement. Families expressing hope for miracles in dire circumstances are not making an intellectual argument to begin with. The author gives some good suggestions for responding to miracle statements. His recommendations include (with some examples and comments from me):

Ask family what a miracle means to them (i.e. what it might look like).
Emphasize non-abandonment (which speaks to yet another item in the differential--fear of abandonment if goals of care are shifted towards comfort).
Reframe the manifestation of miracles (i.e."miracles come in all shapes and sizes"). Better yet, try to have the family reframe the manifestation of miracles (e.g. "While we all hope for the miracle of recovery, are there other miracles you hope for or have already witnessed?)
Suggest that if a miracle occurs, the physicians will do nothing to prevent it. (Perhaps it's better to phrase this in a more positive light and combine it with the statement of non-abandonment, such as "We will continue to monitor your loved one very closely and reevaluate his situation on a regular basis. Should a miracle occur, we will certainly embrace it and see where it takes us." For example, reassuring a family member if a loved one miraculously "woke up" after a severe anoxic brain injury, the medical team would
certainly entertain changing the code status back to full code.)
Cite professional obligations to honor the patient's preference, or when that preference isn't clear, to act in the patient's best interest.

The article acknowledges some of these scenarios will lead to an impasse in decision-making. The suggestions provided should help to avoid this, but sometimes it's inevitable. A tincture of time can be helpful, too.

2) The second article is a general review of spirituality and religion in clinical care by Dr. Dan Sulmasy. It also addresses the issue of miracles both directly and tangentially:

Scientific medicine made it possible to reconcile belief in God as healer with the practice of medicine by physicians through an understanding of God as the inspiration and source for the physician's knowledge, and as the Creator of the world's healing resources, such as medicinal herbs (Sirach [Ben Sira] 38:1-15).

This brings me to perhaps the most intractable aspect (in some cases) of trying to allow for a family's hope for a miracle but at the same time not providing seemingly non-beneficial interventions. The discomfort of this dilemma is often elicited when a family member says something to the effect of, "I hear what you're saying doc. You don't think the treatment will work, but God gave you the knowledge and skills to heal my loved one. You do what you can, and God will be the judge of whether it's enough. If it's not enough, we'll have to deal with that."

In other words, the physician is part of the proposed "mechanism of action" of a miracle.

This is a challenge from a communication standpoint to say the least, and also potentially a spiritual challenge to the physician. Once again, the tendency of many might be to take this to an intellectual level in cases where there is a great deal of certainty that the prognosis is very poor. It's probably best to continue to consider this an empathic opportunity, and go through a reiteration of some of the suggestions above for responding to these statements. Another response to this statement may be to thank the family for their exalted view of physicians, and state hope that God also gives physicians the wisdom to help their loved one avoid unnecessary suffering. (A chaplain might be able to help families with this finer point.)

The rest of the second article is a decent review of the general topic of religion and spirituality. It includes an eloquent description of the difference between religion and spirituality:

I define spirituality as the ways in which a person habitually conducts his or her life in relationship to the question of transcendence. A religion, by contrast, is a set of beliefs, texts, rituals, and other practices that a particular community shares regarding its relationship with the transcendent. Spirituality is thus simultaneously a broader concept than religion and a narrower concept than religion. It is broader in the sense that all religious and even nonreligious persons confront the question of transcendence, and so the term is compatible with all forms of religious belief and even the rejection of religion. Spirituality is narrower than religion, however, in the sense that, because only persons can engage questions of transcendence, each relationship with the transcendent will always be unique and spirituality ultimately personal. Even within a given religion, there will be as many spiritualities as there are individuals.

This seems intuitive but sometimes difficult to put into words for me (especially the part about spirituality being both a broader and narrower concept than religion) so I'll save this paragraph. In fact, both articles might be appropriate for the proverbial teaching file.

Sinclair on Two Month Sabattical

2009-06-20T11:49:00.000-05:00

I tried writing this post ten different ways, but I just could not get the introduction to sound right. So I'll just say it now: I am taking a two month sabbatical from Pallimed. I have no plans to quit the blog, but a wonderful opportunity came along that will consume a lot of my time over the next few months and I didn't want to 'phone it in' here. With Lyle, Drew and Tom writing you shouldn't notice a big change in the posts.

It was a hard decision to make, but between my paying job at Kansas City Hospice and my family and this blog, taking a break from Pallimed was the obvious decision.

If you are curious what I am up to it may not be hard to guess, especially with all the talking about social media I have done in the last few months. I decided to start a social media marketing consulting business called KLX Medi a. It's just a side project, but I want to start it off right. Thanks for all your comments on my posts over the last few years. I hope to come back fresh in a few months with a lot of great stuff to write about.

NAHA Release New Study of Medicare Hospice Data

2009-06-16T22:00:00.002-05:00

The National Alliance for Hospice Access issued a press release and data analysis regarding appropriate access to hospice. This is a significant issue for members of the NAHA because they are supporting reform to the current Aggregate Medicare Hospice Cap in addition to other reforms. The NAHA has voiced displeasure with lack of support from the NHPCO on NAHA positions. A more detailed comparison of the NAHA report to the NHPCO report may show some differences some may find compelling to change their mind and support the NAHA Cap Reform position.

Image by Daniele Sartori via Flickr

The main points from the NAHA data analysis include:

4 out of 10 hospice patients got no more than 10 days of care
Only 16% of hospice patients get 60 to 180 hospice days, the range that improves quality and costs
Minority access to hospice care trails access for whites by 25%

I am going to have to spend some more time comparing the NAHA and NHPCO data before I can give it a full post. Here is a link to the NAHA report and the blog post on the NAHA site.

The poll on views towards the hospice cap last week while non-scientific leaned heavily towards cap reform. Much more than I ever expected given what I have heard in conversations from peers. 214 people voted (you could vote more than once - a significant problem with the poll structure) 13 people thought the cap was fine as it is. 25 wanted to know more about it and a whopping 176 thought it should be reformed. The reason I don't think this poll was accurate is because of people I have talked to at national palliative care meetings the number is more like 3:1 in favor of leaving it be. Also of the 4,000+ hospices, the majority of them are not members of NAHA.

So what that leaves me with is the opinion that we need to have some more open discussions about what the hospice cap problem is, who is affected and what should be done about if anything. If there are enough people discussing this issue in the comments, we will dedicate some more time to the hospice cap and maybe invite representatives of the major hospice organizations to have a roundtable discussion on the subject here on neutral ground at Pallimed.

So if you want it, make some noise. It sure worked for the FDA - morphine issue.

Roger Ebert Discusses His Own Mortality

2009-06-16T20:37:00.000-05:00

Image by .m.e.c. via Flickr

For those of you who neither live in Chicago nor devour columns by film critics you may have missed that Roger Ebert went off the air after complications from thyroid cancer surgery left him unable to speak a few years ago. He has still been quite creative and continues to write his syndicated column hosted by the Chicago Sun-Times.

He also has been blogging since April 2008 and just last month he published a fascinating piece about his reflections on his own mortality. The article is filled with many references to various poets, authors and painters, but only one documentary curiously. The title of the piece references the famous poem by Dylan Thomas, "Do Not Go Gentle Into That Good Night." He starts boldly with his lack of concern about what happens after death based on an Epicurean philosophy.

I know it is coming, and I do not fear it, because I believe there is nothing on the other side of death to fear. I hope to be spared as much pain as possible on the approach path. I was perfectly content before I was born, and I think of death as the same state. What I am grateful for is the gift of intelligence, and for life, love, wonder, and laughter.

Some of the other interesting passages (but really go read it in full):

I have no quarrel with what anyone else subscribes to; everyone deals with these things in his own way, and I have no truths to impart.
...
What I expect will most probably happen is that my body will fail, my mind will cease to function, and that will be that. My genes will not live on, because I have had no children. Perhaps I have been infertile. If I discover that somewhere along the way I conceived a child, let that child step forward and he or she will behold a happy man. Through my wife, I have had stepchildren and grandchildren, and I love them unconditionally, which is the only kind of love worth bothering with.
...
In a moment or a few years, maybe several, I will encounter what Henry James called, on his deathbed, "the Distinguished Thing." I may not be conscious of the moment of passing. I have already been declared dead. It wasn't so bad.

It would be nice if we had more open discussions about our own mortality. You will hear that all the time from any hospice or palliative care professional. I think this piece is also notable for a positive reflection on death from an atheist/agnostic perspective, which I have heard some hospice staff at times wonder aloud how one would approach death peacefully. Regardless of your religious or philosophical beliefs Roger Ebert demonstrates a mature, wise approach to his own mortality and I think it is something we could all learn from.

Post-Script:
Take a read of the 500+comments as well.
Read this take on Ebert's post to see how it inspired others to reflect on their mortality.
Just because I wanted to here are all the artists mentioned in the post. (Almost a Pallimed: Arts & Humanities post by itself):

Edgar Allen Poe, Dylan Thomas, Walt Whitman, Vincent Van Gogh, Albert Camus, Thomas Wolfe, Cormac McCarthy, William Shakespeare, Saul Bellow, Brendan Behan, Henry James, Herge, e.e. cummings, Matthew Arnold, WB Yeats, Theodore Roethke, and DH Lawrence.

Palliative Care Legislation/Regulation Updates

2009-06-14T23:27:00.006-05:00

Image by cafourek via Flickr

With all this discussion about health care reform, there have been a few bills proposed lately and I am going to cover a few of them here in very little detail. I would invite anyone who knows a lot more about these to write a personal (not canned) post and Drew and I will consider it for publication here. Email me at ctsinclair a.t. gmail dot c0m. More commentary on all these bills at the end of the post.

S.B. 1150 Advance Planning and Compassionate Care Act of 2009 by Sen. John Rockefeller [D, WV], Sen. Thomas Carper [D, DE], Sen. Susan Collins [R, ME], Sen. Herbert Kohl [D, WI], Sen. Debbie Ann Stabenow [D, MI], Sen. Ron Wyden [D, OR]

Key Objective of the legislation include:

1. Workforce (physician and nurse practitioner) adequacy and loan forgiveness, National Service Corps, curricular changes, and GME dollars (cap exemption) necessary to assure access to quality palliative care for all Americans;

2. Development of provider reimbursement for conversations about goals of care, and in particular support for completion of orders for life sustaining treatment in appropriate patient populations (POLST);

3. Assuring access to concurrent curative and hospice care for children;

4. Incentives (payment, NQF quality measures compliance) for hospital and nursing home delivery of quality palliative care;

5. Establishment of a National Center on Palliative Care within the NIH as a mechanism to assure adequate attention to the evidence necessary to deliver highest quality of care; and

6. Conduct of an ongoing National Mortality Followback Survey to ensure a process of continuous improvement in the quality of care we deliver to this most vulnerable and needy of patient populations.

(via CAPC - more info here on how to support this bill - Hurry Deadline June 19th)

FDA Opioid Risk Evaluation and Mitigation Strategies Feedback (Deadline June 30th)

The FDA has an open comment period regarding future guidelines and restrictions on opioid prescribing which obviously could greatly affect palliative care and hospice practices. CAPC has put together some great talking points.

S.B.1251, the Senior Navigation and Planning Act of 2009 by Senator Mark Warner (VA)

Key objectives of the legislation include:

* Expanding Medicare's hospice benefits. A "transitional care" benefit would be available for terminally ill people expected to die within 18 months. Currently, Medicare covers hospice for people with a life expectancy of six months or less.
* Providing better education on living wills, counseling for dying patients and respite care for their families through that benefit.
* Requiring doctors, beginning in 2014, to offer certain Medicare patients, such as those with end-stage cancer, renal disease and congestive heart failure, information about advance directives and other planning tools. Doctors who failed to provide the information would not receive Medicare reimbursements.

(via Thaddeus Pope - Medical Futility Blog)

HR 2705: Advance Directives Incentive Act by Rep Jim McDermott [WA]

Details are minimal but Thaddeus Pope has this brief summary: Basically, it purports to amend the Internal Revenue Code to allow a refundable credit for advance directives. Unfortunately, it appears to likely to be be no more successful than the PSDA. First, the “qualified expenses” are limited to legal expenses. But presently, legal expenses are not a significant obstacle to the completion of advance directives. No attorney and usually not even a notary is required to complete an advance directive.

(via Thaddeus Pope at the Medical Futility Blog)

Not to mention the NHPCO lawsuit against CMS, the 2010 Wage Index issue, the NAHA and the Cap Reform. We need a simple site that tracks where all these things are. I am starting to get really confused with all these measures. Does anyone want to help organize the information coming from all of these sources regardless of which organization supports which bill? We could act as a non-partisan repository if someone else was up to it.

Also I see all these formalized efforts by NHPCO, CAPC, NAHA and others being potentially weaker because there is not a way for people to show they wrote letters to get a bandwagon like effect or a merit badge phenomenon. Could social media tools like Facebook, Twitter or blogs be a way to say "I wrote my letter...have you?" By the way I haven't written to support or oppose any of these measures so I guess I should stop writing this post and maybe do some grass roots advocacy. Feel free to post here if you have.

Palliative Care - A Surgeon Calls It Right

2009-06-14T23:12:00.003-05:00

Image by Getty Images via Daylife

Dr. Jeffery Parks is a popular medical blogger from Ohio who writes at Buckeye Surgeon. He has written in the past about end-of-life issues relating to whether or not to extubate a patient for comfort care. He advocated for never extubating a patient, which was in opposition to palliative care standards of care I understood. More recently he published a post about the clinical inertia of the American health care system which would be very familiar to many palliative care clinicians.

I walked into the room and I saw a ninety year old, 100 pound guy who glowed yellow. He looked skeletal. His skin was paper thin, like cellophane wrapped around a chicken breast. He was affable enough. He knew where he was. He said his stomach had been hurting him for months. He'd lost close to fifty pounds since Christmas. He lived alone in an assisted living facility. He had a son in Alabama, but that was it...

...His Ca19-9 was over 20,000. A CT scan had been done at 3AM but there wasn't a read on it yet. I looked at it myself and easily identified a giant mid body pancreatic mass with multiple liver mets. I wrote a note about the findings and recommended a hospice consult.

The next day he came in to find several consultants notified and a full medical workup beginning. Read the rest of his well written post to hear what he did to make this a better situation. Leave some comments in his blog post too, after all we need to support surgeons and other doctors who see these situations.

Welcome New York Times Readers!

2009-06-11T15:09:00.003-05:00

If you clicked through to Pallimed from the recent New York Times column on "Medicine in the Age of Twitter" welcome to Pallimed.

This is a blog discussing news and research about palliative medicine and hospice and while some of the discussions are aimed at the medical professionals in the field we openly invite any patients or families to ask questions and leave comments. Our goal here is to have an open forum about some of the difficult issues in medicine regarding pain control, making medical decisions in the face of life-threatening illness, how to be better communicators with our patients and families, and many other topics.

You can see some of our major topics by clicking on any of the labels in the label cloud in the left hand column. You may find our companion blogs "Arts & Humanities" and "Case Conferences" interesting as well so please click on them on the top.

We have five contributors here:
Drew Rosielle, MD (Editor/Founder)
Christian Sinclair, MD, FAAHPM @ctsinclair on Twitter
Thomas Quinn, APRN, CHPN
Lyle Fettig, MD @lyfe20 on Twitter
Amber Wollesen, MD
Amy Clarkson, MD

If you have any questions or experiences with hospice or palliative care or medicine and social media please leave a comment and we'll start a conversation. If you are a doctor, nurse or generally involved in health care and want to talk more about how to use social media wisely feel free to email me at ctsinclair [at] gmaill [dot] com. (And I will tell you why I am not afraid to give out my personal email and other medical staff should not be either)

'Well, I’m still in a quandary over that...'

2009-06-10T08:30:00.001-05:00

Two related articles on surrogate decision making.

Research on Aging has a study about older adults' understanding of their spouses' end of life preferences. The data come from the Wisconsin Longitudinal Study - a large, decades long study of many thousands of people who graduated from Wisconsin high schools in 1957 (nearly all participants are white). This study involves ~2700 married couple, all approximately 65 years old, who were surveyed in 2004 and were asked, among other things, questions about EOL treatment preferences: the scenarios given were basically 'you're dying and in severe constant pain - would you/spouse want to continue/not all life-prolonging treatments?' & 'you have limited ability to speak/walk/recognize others - would you/spouse want to continue/or not life-prolonging treatments?' Respondents said what they'd want and what they thought their spouse would want.

Most people (80% range for pain, 90% range for cognitive impairment) said 'No' to life prolonging treatments in both scenarios for both themselves and their spouses and there was good concordance (in the 80% range). About a third of participants had named a health care power of attorney; and about half said they had discussed preferences with their POA. There weren't any real gender differences and respondents reporting that they had spoken about their preferences with their spouse weren't any better predictors than those that hadn't.

A few thoughts about this. The concordance rates here are significantly higher than prior research into this (this is me speaking from memory here - my general impression over the years from following similar research is that surrogates/spouses' predictions are very accurate), however pretty much everyone here was saying 'no thanks' to these scenarios which make this difficult to interpret. This represents further research showing that having a conversation with a loved one (or at least reporting you've had a conversation) does not improve accuracy in predicting what that loved one would say in these EOL scenarios. Finally, what gives me pause about this whole thing is wondering how helpful the scenarios actually are, particularly the first one. (The second scenario essentially describes severe dementia and most Americans seem to say 'keep me comfortable' when severe dementia is described to them, which is not to say that is what happens by any means.) The first scenario describes a thankfully rare situation, and I can't remember the last time, when I sat with a surrogate and said 'your choices are maintaining your loved one is a state of permanent severe pain or keeping them comfortable.' This is for a lot of reasons of course, but most of the conversations/scenarios are much more ambiguous and aren't 'either/or' Comfort+Death-sooner vs. Agony+Death-a-little-later scenarios. And I'm glad they're not. But the fact that most people don't choose Agony+Death-a-little-later for their spouses (who agree!) is not particularly telling about the accuracy of surrogate decision-making.

Of course the Real Big Question here is if so many of us (by us I guess I mean Americans) want no life-prolonging treatments in the setting of advanced dementia why are so many of us getting them?

Journal of Aging and Health has a qualitative study on how surrogate decision makers of patients with dementia arrived at their knowledge of patients' EOL wishes. The study involves interviews with 34 surrogates (76% white, 79% female, 38% children, 35% spouses) of nursing home residents with advanced dementia, and involves asking them about EOL decisions, what the surrogates base that on, etc. Most of the paper is a thematic, narrative description of what these surrogates said about conversations they had, how/why the patient filled out an advance directive, what prompted having a discussion about EOL care with the surrogate (if ever), what the surrogate is basing their decisions on, etc. I basically found it an interesting read - what these people said about these experiences - it's kind of like seeing your (work-) life laid out before you.

A couple interesting items from the paper.... First is a list of how the surrogates described what their loved ones said to them about 'extraordinary measures' (this the language the surrogates used):

Not on a machine just to stay alive
No life suspension
No keeping alive with machines
Not prolong this life
If we ever got terminal, don’t hook us up to anything
We don’t want life extended by artificial means
No advance life support
“I wouldn’t want to be kept alive by a machine”
Not on any type of machinery to keep her alive; “I don’t want to be kept alive artificially”
She wouldn’t want to be hooked up to any system to keep her
Absolutely no extra activities to keep him alive
No life support
If it’s her time she wants to go. “Don’t keep me here. Don’t hook me up.”
Didn’t want to be on no support thing, like something to keep her living
Didn’t want to be held for 5 years on artificial nourishment

I initially thought 'life suspension' was kind of quaint, but reflecting on it further it doesn't seem inappropriate at all to the situation.

The second speaks for itself, and was a reminder to me of just how difficult it can be at times for family members who are told some variation of You need to make the decision s/he would make if he could. Some people take that instruction seriously, which doesn't make it any easier, and I've seen it cause more confusion than clarity on numerous occasions. Patients don't know what they want half the time: they want 'to live' (who doesn't?) but don't want unnecessarily burdensome, painful, displacing, unhelpful medical care when they're dying (who doesn't?) - the problem is figuring out what exactly that means. I have easily had a dozen situations in the last year in which a loving family member, struggling with a decision, told me some variation of 'Mom told me she never wanted to go a hospital and that I should never give up on her no matter what.'

Interviewer: So he never, ever mentioned what kinds of medical procedures he would want if he became very ill?

Surrogate: Well, once in a while he would say something. He’s not consistent.
Sometimes he says, “Yeah, I want them to do everything.” And then, if he
sees something on TV, he’ll say, “I don’t want that.” And then he’ll go back,
“Yeah, they should try to save you.” So, they just put the whole burden on us
to figure it out.

Interviewer: Okay, so there was no informal planning or formal planning at all.

Surrogate: Uh-uh [negative].

Interviewer: And what is your understanding of what your father wants? How
did you come to some understanding that helped you decide his view?

Surrogate: Well, I’m still in a quandary over that, to tell you the truth.

Pall-Pourri: Video ACP, Palliative Sedation, & More

2009-06-10T08:25:00.000-05:00

1)
BMJ has published a randomized controlled trial of a video-based decision support tool for advance care planning in dementia (related to this trial we blogged on a couple years ago; see also here). The video used is available in the free-full-text version on the BMJ website. This study invovled older patients who were randomized to a narrative description of advanced dementia vs. a video depicting a patient with AD, and asking subjects what sort of care they'd want. This is similar to the prior study but this study uses a separate control group (the prior one compared subjects' responses before and after seeing the video). As in the prior study, after seeing the video, the vast majority of subjects reported they'd prefer comfort-only measures and no life-prolonging treatments (86%, vs 64% in the written group). The video group's knowledge of dementia was better afterwards, and their treatment preferences were more durable (didn't change over time) compared with the written group.

This research is quite compelling: very simple and elegant in its design and execution, with compelling results. I am curious as to how it will be received in the general community (I guess I mean in primary care clinics where presumably this ACP should be happening) and if it will change anything, or if there are plans to bring this sort of ACP to the masses (e.g. public education campaigns, etc.). I don't do a lot of ACP for dementia (I get consulted on patients after they have dementia and family members are struggling with decisions) but do do a lot of 'ACP' about, for instance, CPR and it looks like Angelo Volandes (the doc primarily behind most of this research) is working on that very thing: http://www.acpdecisions.com/acpdecisions/Videos.html. I'm very much looking forward to the videos and what the research shows about their impact.

2)
The same BMJ issue has another part in the series I mentioned before on prognostic research: this one is on validating prognostic models, which is a relevant topic for Pallimed readers as we frequently discuss research on prognostic models and wonder how one can really judge their clinical relevance.

There's also a fascinating speculative article for pharmacology wonks out there and the generally curious about how psychiatric drugs work. I do not know if what the authors propose is 'correct' however it's always good to have one's paradigm's challenged. The core of their argument is as such:

An alternative, drug centred model of drug action, stressesthat psychiatric drugs are, first and foremost, psychoactivedrugs. They induce complex, varied, often unpredictable physicaland mental states that patients typically experience as global,rather than distinct therapeutic effects and side effects.Drugs may be useful because some altered states can suppressthe manifestations of certain mental disorders. The disease centred model of drug action developed in the 1950sand 1960s and replaced a drug centred understanding of how psychiatricdrugs worked. For example, the early investigators of neurolepticor antipsychotic drugs suggested that they worked by inducinga neurological syndrome consisting of physical restriction andmental symptoms such as cognitive slowing, apathy, and emotionalflattening, which resembled Parkinson’s disease. Theseeffects also reduced the intensity of psychotic symptoms. Thus,extrapyramidal effects, and their conjoined mental effects,were not regarded as side effects but as the mechanism by whichthe drugs produced their intended outcome.

3)
Lancet Oncology has a wonkish discussion of 'palliative sedation.' It's a somewhat searching, philosophical (literally: discusses personhood in the context of Descartes, Locke, Kant, and others), and meandering walk through the ethical controversies surrounding PS (they call it 'deep and continuous palliative sedation' when referring to the practice of deliberately pharmacologically inducing a coma with the intention of maintaining a patient in it until death in order to relieve intractable suffering). A lot of it focuses on the question of if inducing a coma extinguishes thought, does it therefore extinguish self-hood/person-hood, and if there's no intention of lightening the coma, is not one then 'killing' a person, and so is PS just a form of (or philosophically/morally equivalent to) euthanasia? Yes, I said it's wonkish, and while I don't think these Big Ideas are meaningless (and frankly enjoy thinking about them), and probably become more relevant the further PS gets away from a strategy to treat intractable somatic symptoms in otherwise dying patients, I also struggle with where the 'fancy' ideas get us.

Impact of delirium on dementia

2009-06-07T20:30:00.000-05:00

Neurology has a fascinating study about the impact of delirium on cognitive decline in patients with dementia.

The patients, all with dementia, come from a single institution's large memory clinic, and were followed at regular intervals longitudinally. They essentially compared the rate/trajectory of cognitive decline in patients without incident episodes of delirium (~3oo patients) with those who with an episode of delirium (~70 patients).

(Note: they identified patients with delirium based on hospital chart review - it's unclear exactly how but it looks like it includes looking for documentation of acute alternations in mental status in the chart. This strikes me as a way of underestimating delirium as I often see it missed (diagnostically) and missed/ignored in charts. When I was a fellow I did a chart review for a project and remember seeing all these progress notes with physical exam documentations "A&O X3" pretty much every day. Concurrent with that the speech therapist would be leaving daily notes: 'Tried to do bedside swallow eval; patient lethargic and unable to cooperate.' This could go on for days. Anyway, one hopes they included speech path notes in their chart review.)

After adjusting for age, sex, educational level, dementia severity rating score, duration of dementia symptoms before diagnosis, family history of dementia, and number of comorbid medical diagnoses they found that those who had delirium had a more rapid rate of cognitive decline after delirium compared with those who didn't. In fact, the rate of decline for those without delirium was flat across the assessments; for those with delirium it sharpened (worsened) after the episode.

All this is based on a dementia severity rating score that I'm not familiar with and I can't really comment on the magnitude of the change, but it was statistically significant. The two groups' rates of decline (after controlling for the above factors) was similar prior to the interval in which the delirium occurred suggesting that in fact the episode of delirium was a disease modifying event, for the worst (the alternative explanation is that whatever caused the delirium was the disease modifying event). The authors give this ball-park estimation of the effect of an episode of delirium:

From a clinicalstandpoint, this study suggests that over 12 months, patientswith AD who become delirious experience the equivalent of an18-month decline compared to those who do not experience delirium.

This so far has been the year of quantifying just how significantly delirium increases morbidity and mortality in older and particularly demented patients, and this paper adds to the mix.

A few thoughts & questions.... When I was taught about delirium in medical school and residency my sense was that it was this self-limited event/syndrome that occurred generally in the setting of acute medical illness/stressors (including drug toxicities) and then just kinda gets better once the problem causing the delirium is fixed/resolved/removed. I think I had some sense that it was a poor prognostic marker for those with dementia as well. However, it appears it can also be not just a prognostic marker but a disease modifying event as well (one that actively worsens prognosis and is not just an epiphenomenon of a poor prognosis) and can persist long term/indefinitely at times. Is this me just gaining some wisdom or is this an emerging concept that is coming out with stronger and stronger research backing the last several years?

In addition, if hospital delirium is so bad, why is its prevention and treatment so poorly studied? Prevention has some decent research base, treatment really has very little besides a few key articles. If the above is true one could argue that preventing a single episode of delirium is likely going to help someone as much as years of donezepil, yet why is delirium essentially being treated as an orphan syndrome? Cynical answer: drug companies aren't interested. Non-cynical answer: people are only just beginning to realize the long-term morbidity it causes.

Chemotherapy at the end of life

2009-06-07T20:25:00.000-05:00

Annals of Oncology has an article about the use of chemotherapy at the end of life. It's a retrospective cohort study from a single cancer center in Australia, looking at all patients who had died (N=750; median age 67 years; 20% with lung cancer and the rest with a smattering of everything else) from incurable solid tumor malignancies between 2005 and 2007 (patients who died while receiving treatment with curative intent were excluded).

Only 4 and 10% of patients received chemotherapy during the last 2 and 4 weeks of life, respectively. This is significantly lower than recent US figures (which are in the 15-20% range for the last 2 weeks of life). Age, gender, country of origin, type of cancer did not predict receiving chemotherapy in the last month of life. However, treating oncologist did - there were distinct and significant differences between individual oncologists (rates ranged from 8% to 28%). There was a strong trend (not reaching statistical significance) for individual oncologist being a predictor of receiving chemo in the last 2 weeks of life as well.

Some caution here: this was a univariate analysis and it's possible that certain oncologists treated different types of cancers which lead to the differences. However, when they actually looked at if type of cancer predicted receiving late chemo it didn't which would suggest this is not the case at least with these data. (They anecdotally suggest in their comments as well that at this center all the oncologists treat all cancer types.)

This is a disturbing finding. The type of care you receive (including the circumstances of how you die) should ideally be determined by you/your values and what's medically available/reasonable - not by which doctor you happen to get assigned to. You wouldn't want to die in an ICU against your wishes just because of who your PCP happens to be and this isn't any different. There will always be variations in practice, style, approach, etc. - of course. A more than 3-fold difference however, again assuming these oncologists were seeing similar mixes of patients, is an indication that the type and quality of care was being determined by something other than patients and what's medically reasonable. Always, but in particular at life's end, the care patients receive should be 'about them' (for them, to meet their goals, etc.) and not 'about us' as doctors and what we are and aren't comfortable with. I'm not particularly aware of other studies which have shown this phenomenon (about individual docs) but they may be out there (please comment on them if you know of them). (In the Coping with Cancer Study, regional variations made a big difference for, perhaps, comprehensible reasons.)

They also mention this issue, which I guess is important in the Australia, too:

Another possible explanation for the continuation of chemotherapyat the end of life is that recommending a new course of chemotherapyto patients is often an easier option than discussing cessationof chemotherapy and transition to palliative care with themand their caregivers. It is ironic that in both the United Statesand Australia, oncologists receive financial reimbursement forchemotherapy delivery but little or no reimbursement for thetime-consuming and emotionally difficult process of family conferencesor end-of-life discussions.

Even at the academic center I work at, in which there is no direct or really indirect financial incentive for my colleagues to prescribe chemotherapy, there is a distinct lack of compensation/incentive for talking with patients at length (I know because that's what I do and it's not very reimbursable). The sad thing is, in oncology and elsewhere, the vast majority of people want to do the right thing but we've created this system for ourselves which effectively punishes us for doing that as it means we see fewer patients in a day, or spend longer hours doing the right thing without any commensurate compensation.