Monday, March 10, 2014
The annual Pallimed / Geripal party is back on for this year's AAHPM/HPNA/SWHPN 2014 Annual Assembly. We are going to do a similar progressive party as we did at the 2013 annual meeting in New Orleans. What does this mean? Basically we will start off at the Field Irish Pub at 9pm on Thursday March 13, and as the evening progresses, we will be moving to different locations. The only way to find out where we are is to use social media and follow on of the Pallimed/Pallimed feeds, or the #HPMparty hashtag.
Date: Thursday, March 13th. Start time 9pm. End time TBD
Where: Depends
- Only way to find out is to keep up with our twitter and Facebook feeds, or type in #hpmparty in twitter to follow the live feed
- Pallimed Twitter feed / Pallimed Facebook page
- GeriPal Twitter feed / GeriPal Facebook page
- #HPMparty twitter feed
Starting location: The Field Irish Pub
- 544 Fifth Avenue, San Diego, CA 92101.
- Between Market Street and Island Avenue (click here for directions)
Monday, March 10, 2014
Wednesday, March 5, 2014
I read it in 2004 when I was a hospice and palliative care fellow and I was so hungry for any knowledge about how to be a better doctor for people at the end of life. It may be hard to believe, but in 2004 there wasn't a lot of readily available information like we have seen in the past few years. The lessons from the book still resonated, even though the book was a decade old at the time I read it.
As a surgeon he recognized that he had been fighting against death and instead over-medicalizing this universal human event throughout his career and was willing to say it publicly and call out the medical establishment for doing the same. The New York Times obituary points out that Nuland himself worked hard to give his brother hope for cure and survival before his death in 1990, which is a familiar story to anyone who has ever cared for a patient with health care professionals in the family.
The book rising to national prominence came when the country was grappling with issues of medical care and control over the end of life. If you know your end-of-life ethics history you will obviously recognize the year 1994 for its significance in ushering the United States first voter approved initiative for physician aid-in-dying with Oregon’s Death With Dignity act. (It was challenged in the courts and did not become implemented until 1997.) It was also not long after the Patient Self-Determination Act (1990) highlighted the need for advance care planning, and other important ethics cases such as Dr. Jack Kevorkian and Terry Schiavo.
His writing diversified but he always foucsed on combining his career of medicine with a little philosophy including books such as The Art of Aging, How We Live, and The Soul of Medicine, in addition to numerous articles in non-medical publications. You can watch him at a very early TED talk from 2003 on the Extraordinary Power of Ordinary Humans. Or watch him talking about his inspiration for "How We Die" and how 'Death was in the legend and lore of my family.'
One passage that stood out to me in my early career is his description of The Riddle. I saw this in myself as a medical resident looking backwards and have seen it since practicing as a palliative medicine doctor.
“Every medical specialist must admit that he has at times convinced patients to undergo diagnostic or therapeutic measures at a point in illness so far beyond reason that The Riddle might better have remained unsolved. Too often near the end, were the doctor able to see deeply within himself, he might recognize that his decisions and advice are motivated by his inability to give up The Riddle and admit defeat as long as there is any chance of solving it. Though he be kind and considerate of the patient he treats, he allows himself to push his kindness aside because the seduction of The Riddle is so strong and the failure to solve it renders him so weak.”If you decide to pick his book up and give it a fresh look now that it is 20 years old, let me know what you think of it. Maybe we could have a historical book club?
Wednesday, March 5, 2014
Sunday, March 2, 2014
I’m know I’m not alone in pining for in-depth portrayals in mainstream culture of the complexities in caring for people near the end of their lives. Working in palliative care and hospice allows us to witness (and sometimes be part of) wonderful stories of love, forgiveness and redemption. Stories that would seem to fit in any high quality film or TV show come naturally in our field. So tonight when the Academy Awards are being handed out, keep an ear out for Prison Terminal: The Last Days of Private Jack Hall. It may only be mentioned right before a commercial break, or not at all on the telecast, but it is something any hospice advocate should know about.
This film was featured in the early stages here on Pallimed by Dr. Holly Yang back in 2011 when Edgar Barens was still developing financing for the film. Although the initial Kickstarter did not reach the funding goal, Mr. Barens kept at it. The Oscar nominated film for Best Short Subject Documentary features the story of Jack Hall who is confined at Iowa State Penitentiary for life. With the aging prison population, hospice prisons are becoming more common, the most famous (if you can call it that) is Angola Prison Hospice, which was featured in another film by Edgar Barens.
The film has been getting some high praise for a intimate look into the tough subject. While a few prisoners do get parole or compassionate release if they are dying, the chances are much greater that they may die in prison if they are in for life or a very long sentence. I realize many would think there is not problem with someone dying in prison as part of the ultimate punishment for the crimes they have been sentenced for. But when you watch films like Prison Terminal or the other two documentaries by Mr. Barens on the subject (Angola Prison Hospice: Opening the Door and A Sentence of Their Own), it can really make you think about the human condition and the role of prison and redemption in challenging new ways.
You can catch the film on HBO at the end of March and I really hope you do, so we can have a great discussion about it afterwards here.
Find more about the film and the filmmaker, Edgar Barens, at the Prison Terminal Website, Facebook, and Twitter (@prisonterminal)
Sunday, March 2, 2014
Thursday, January 9, 2014
One of the consistent errors made by people commenting on this story, either in the comments sections or on social media, is the failure to understand the difference between estimated marginal life expectancy and actual marginal life span. The hospice regulations require two physicians to certify that the patient’s life expectancy is less than or equal to six months if the disease/illness runs its normal course, given their current condition and taking into account any decisions made by the patient/family to forego potential treatments. Many are erroneously confusing life span and life expectancy.
If the regulations instead required two physicians to certify that the patient’s actual marginal life span will be six months or less, then these commenters would be right. In that case, patients who lived longer than six months would be evidence of error. You would probably allow a few of them, as an acceptable error rate. One commenter argued that patients who lived longer than six months should be considered analogous to the patients with suspected appendicitis, had surgery, yet turned out to have a normal appendix. You accept a percentage of surgeries for normal appendixes in order to minimize the risk for missing abnormal appendixes. (This was a more common idea prior to the more extensive use of imaging to guide the surgery decision.) This is an inappropriate analogy. Starting an appendectomy for someone with a normal appendix is a mistake. No benefit accrues to the patient. A patient who lives for seven months after being admitted to hospice is not necessarily a mistake. It does not follow that the original certification was wrong. In fact, it was probably right. At worst it was likely to be borderline. Half the patients in a group with a median life expectancy of six months will live longer than six months. Those who do still received a benefit from being on hospice. And Medicare saved money because they were on hospice.
Since the regulations stipulate life expectancy, it would be useful to think about what a frequency distribution curve would look like for a set of patients with a median life expectancy of less than six months. It would be a positively-skewed distribution. It bunches up at the left side, since it is bounded at zero days. Patients cannot die sooner than right now. It tails off to the right, with what are called outliers. The flatter the curve, the further out that tail will go. For non-cancer diagnoses that are harder to prognosticate, the curve is flatter, with more outliers and more extreme values for outliers. This is not indicative of fraud. Claiming it is represents a misunderstanding of the mathematics involved.
Hospices have traditionally enrolled patients with life expectancies considerably less than six months. It has been a concerted effort to try to enroll patients sooner. This has been encouraged (even by MedPAC) as a way to save Medicare a great deal of (more) money. Consider the “ideal” situation, where most patients were enrolled when they reached a median life-expectancy of six months. In this case, half of the patients would have a life-expectancy greater than six months. There would (for most diagnoses) be outliers that stretched into years. A hospice that succeeds in enrolling patients earlier in the process—closer to the six month estimate – will end up with more patients who live 7+ months. This is simply the mathematical consequence of a positively-skewed distribution, which is what a life-expectancy distribution for hospice patients looks like. (The stats geeks reading this, who are already seething about my over-simplifications here, may be thinking that the distribution is actually bi-modal. I hear you. I feel your pain. But I’m not going to try to go into that idea now.)
Currently, when you see differences in the MEAN length of stay for for-profit hospices compared to not-for-profit hospices, it is because of differences in the mix between cancer and non-cancer diagnoses. The MEDIAN length of stay shows no difference. Cancer has a more predictable course. Its life-expectancy distribution curves are narrower. Non-cancer diagnoses have flatter curves, with more skew to the right. The outliers are further away from the median. The more of these patients enrolled, the more extreme outliers you expect, and the further you pull the mean away from the median. The authors admitted that NHPCO had explained this to them, but then ignored that explanation (or didn’t understand it) when they asserted that “the growth in the average duration of hospice care stems less from the decline in the proportion of cancer patients than from another trend. Patients who are suffering from a non-cancer ailment began staying longer on hospice: Their average stay in hospice care grew from six weeks to almost 11 weeks on average between 2002 and 2012.“ Do note that the authors are using an increase in average length of stay to 11 weeks as part of their argument. 11 weeks is less than three months. The Medicare Hospice benefit asks us to certify patients with an expected life expectancy of six months or less, more than twice that average. Any argument that seriously uses an 11 week mean length of stay as an argument that an unacceptably high proportion of these patients really had a life expectancy of greater than six months is prima facie a bad argument.
Others commented that non-death discharges should be viewed as errors as well. While I agree that the very high percentage of non-death discharges is worth looking into further, I vehemently disagree with the idea that non-death discharges should in general be considered failures, wastes of money, or fraud. There are many reasons for non-death discharges. Those of us who are hospice providers consider many of these reasons to be successes rather than failures.
Take the cancer patient who would have wanted to try chemotherapy but whose oncologist feels that performance status is too poor and burden outweighs benefit. This patient can enroll in hospice. Patients often feel better, improve, after enrolling in hospice. The extra help at home. The excellent symptom management. The optimization of medication regimen (which often includes discontinuing cholesterol, blood pressure, and diabetes medications that don’t have a net benefit vs burden). All of these things can contribute to a patient improving. Some of these patients will improve sufficiently that they are candidates for chemotherapy. We happily discharge these patients, knowing that we helped them and that they are not getting the treatment that is consistent with their goals. We call these patients “hospice graduates”.
The same sort of improvement can be seen in non-cancer patients as well. Dementia patients are a prime example of this. We see improvements for the same reasons: more care at home, better symptom management, optimization of medication regimens. Now these patients improve enough that they no longer fit the category of “life-expectancy less than six months”. We discharge these patients, but LESS happily. We are happy that they improved, but we’d like to keep them, since we think our interventions led to the improvements. For Alzheimer’s disease, these patients are STILL DYING. They still have a terminal illness. They just have a life expectancy estimate that exceeds six months. Most of us wish we didn’t have to discharge these patients. We discharge them because we play by the rules. A rational, well-designed Medicare hospice policy wouldn’t require us to do so. Note that the scrutiny placed on hospices for these patients has actually led to more patients being discharged (as hospices fear they will be challenged on these admits). If you are more interested in scoring rhetorical points than you are in having an honest discussion, then you can use this “increase in live discharges” to claim this proves that hospices were doing something wrong all along.
The authors inappropriately used mean as the measure of central tendency when discussing length of stay. Hospice length of stay data graphs out as a positively-skewed distribution. The honest measure of central tendency to use with such a distribution is the median. Use of the mean instead is considered to be deceptive. It will be listed in any handbook of “How to Lie with Statistics”. This is basic, intro-level stuff. There are only two possibilities. Either the authors knew that mean was inappropriate or they didn’t. If they didn’t know that using the mean is inappropriate, then they are not qualified to be incorporating such statistics into their articles without seeking help. (Their editor should have caught this. If neither the editor nor the authors were sufficiently familiar with intro-level statistics, they should have asked a starving adjunct professor teaching at the local community college to help them out.) If they DID know that mean was inappropriate and chose to use it anyway, then they are guilty of deception, of believing that their narrative was so important that the means justified the ends when trying to convince others. Including both mean and median would be acceptable reporting (and is what both NHPCO and MedPAC do).
The mean length of stay did increase between 2000 and 2011, but didn’t substantially between 2009, 2010, and 2011. Between 2009 and 2010, both the mean and median length of stay DECREASED. The median (50th percentile) length of service in 2010 was 19.7 days, a decrease from 21.1 days in 2009. The average length of service dropped to 67.4 days in 2010 from 69 days in 2009. Comparing 2000 to 2011, the average length of stay increased from 54 to 86, but the median stayed the same at 17 days. Between 2000 and 2011, total number of hospice patients increased from 534,000 to 1,219,000.
For access to the primary data:
http://www.medpac.gov/chapters/Mar13_Ch12.pdf
http://www.nhpco.org/press-room/press-releases/research-published-jama
http://www.nhpco.org/press-room/press-releases/hospice-facts-figures
And for annual stats back to 2006 see this Pallimed post.
Thus the same number of short stay and long stay patients are being added. Long stay patients defray the costs of taking care of short stay patients. And long stay patients enrolled in hospice still save Medicare money, even the outliers.
The authors used flawed MedPAC data when discussing profit margin. MedPAC itself admits that their data is inaccurate and incomplete. It fails to include costs for federally mandated volunteer (for at least 5% of patient care hours) and bereavement services (for at least 13 months after patient death). These are real costs to hospices, and the data ignores them.
From this NHPCO press release:
“The discrepancy in the numbers is an indication of a change in the calculation methodology, by excluding the costs of delivering statutorily mandated services, rather than pointing to the fact that hospice margins are actually shrinking. For MedPAC to recommend countering an erroneous growth in hospice margins by reducing the annual inflationary adjustment is absurd and potentially devastating to the hospice community”.Finally, let me reiterate that I actually agree that there is some fraud by hospice firms. There is some fraud in all situations involving companies with a profit motive. The authors did not make their case that it is widespread. They didn’t come close to making their case that hospice firms are costing Medicare any money at all, much less “draining billions”. They pointed out that some lawsuits are pending. I’d point out that these represent potential problems and not yet proven ones. Judges have ruled against Medicare and for hospice organziations in the past in hospice CAP payment cases.
Despite having grossly exaggerated the cost to Medicare, falsely suggested that discharged patients weren’t actually dying, and deceptively used statistics to advance their narrative, the authors did raise some important points as well. They described some fairly unpleasant recruitment tactics. I consider some of these tactics to be unethical. I would not want to be involved with a hospice that used them. The recruitment bonuses are particularly galling. Note that the NHPCO actually considers these to be unethical as well. They are not, however, against the current rules, nor are they illegal. And they are the same sorts of things that happen at businesses around the country. I want hospices to be better than businesses around the country. My gut feeling is that hospices ARE in general better than businesses around the country. (I think that this stems partly from the fact that hospice team members, current blogger excepted, in general are very nice people.) But we can’t expect all hospice firms to be better than other corporations just because it’s the nice thing to do. With money involved, it isn’t a surprise that some companies aren’t. If Medicare would like to write some better rules, I’d be among those cheering.
Other posts in this series:
Part 1 (Tue): Debunking the hyperbolic headlines
Part 2 (Wed): Did these hospices enroll patients inappropriately? Do for-profit and not-for profit hospices differ?
Part 3 (Thu): Digging into the statistics and the way forward
Bruce Scott (@skipbidder) is an academic physician in Ohio, fellowship-trained and board certified in Geriatrics and in Hospice and Palliative Medicine. His hobbies include boardgaming, cooking, and pedantry.
Thursday, January 9, 2014
Wednesday, January 8, 2014
(If you missed Part 1, you can read it here. If you don’t have time, here is the quick summary. The Washington Post wrote an article December 26th, 2013 claiming hospice care was taking billions from Medicare presumably in waste and fraud. This series offers a critical review debunking the claims and offering a more insightful view of the challenges hospices face. - Ed. Sinclair)
6) Did these hospices enroll patients inappropriately?
This is the element that most needs to be addressed. The only real way to assess this is by checking the documentation for the individual hospices in question. If there had been a report of widespread denials for inappropriate hospice admissions, it would have done much more to support the assertion that hospice firms were draining money from Medicare. That would mean that they were doing so outside of the current rules rather than within them. The lawsuits mentioned will help bring clarity here. Do I doubt that there is fraud involved in some hospices? Not in the slightest bit. One could expect some le
vel of fraud, since there is a significant amount of money involved. If these hospices were clearly admitting patients outside of the regulations, then they should be punished. If the situation is widespread enough, then steps need to be put in place to prevent it. This does not come close to justifying the “draining billions” headline, though. It also doesn’t come close to being a few rotten apples that spoil the bunch. If the cases go against them, it will be a few rotten apples that got caught and punished. And even then, these rotten apples saved Medicare money along the way for the appropriate care they delivered to eligible patients.
If these hospices WERE NOT habitually admitting patients illegitimately, but we are still unhappy with their practices (while following the rules), then we need to change the rules. Any set of rules that allow for “gaming” WILL BE gamed when corporations are concerned. This is simply an expected consequence of how companies work in our capitalist system. Would a system that only had government hospices and charity hospices work better than the one we have now? Maybe. Probably. It seems to work well in the UK. But it would take a fundamental change in the way we as a country handle this part of healthcare. And it is very clear that we are nowhere near this being politically feasible. So if we are going to have for-profit companies delivering hospice care, then Medicare should write better rules. You cannot punish a company for maximizing their profits if they are following the rules and breaking no laws. So the parts of the article that refer to gaming the system to avoid running over cap are moot. They are NOT the fault of the companies doing the gaming but of poor rules construction. (Note that I’m using “gaming” here because I don’t like some of the practices described either. The companies probably won’t agree that gaming is a fair description, of course.) The decisions to game the system are not made by hospice docs. They are made by administrators and the financial folks. Nobody is knocking down MY door to ask me to make the decisions about what to do when the hospice has some extra money left over. There are good reasons for this, one of them being that I’d spent it differently than the bean counters would. The social worker would get a raise. Or we’d get the chaplain an electric plug-in menorah that doesn’t violate fire codes at the nursing home. Or we’d get one of those snazzy one-cup coffee makers for the family area in the inpatient unit. Or we’d hire some other staff, like a pharmacist or a psychologist or even a music thanatologist. But I’m a hospice doc, and a true believer. They don’t let me make these calls.
7) Do for-profit and not-for-profit hospices differ in the quality of care they provide for patients?
I personally used to suspect this to be the case. I ached for this to be the case. I would have to take extra care to make sure I fairly evaluated the evidence, since I had so much personally invested in the idea that not-for-profit hospices were better. I’ve had personal experience with many hospices that I’ve worked or trained at (and more still that I’ve referred patients to), including for-profit, not-for-profit, and government (VA). The VA was different, since they operated under what was essentially an open-access model. Apart from that and the one open-access for-profit hospice I worked at in training, the hospices were pretty similar in terms of the patients enrolled and the certification processes. The quality of care was fairly similar as well. I do personally think some hospices do a better job, and I could rank them in mind, but these preferences do not break on profit vs non-profit lines. These are all anecdotal experiences, however, and don’t really provide much ground for generalization. (Any more than the strangely high Alabama non-death discharge hospices do.) Luckily, the NHPCO has done surveys on families to gauge satisfaction, so we have data instead of anecdote. Their comprehensive Family Evaluation of Hospice Care survey shows no differences in family caregivers’ evaluation of quality of care. (This information appears to be available only to members, so I can’t link to it here.) Christian Sinclair reviewed this issue in 2011 on Pallimed and since then there have not been any ground breaking journal articles exposing a huge gap in the quality of hospice care based on profit status.
To be continued...Part 3 of this rebuttal will be posted Thursday
Part 1 (Tue): Debunking the hyperbolic headlines
Part 2 (Wed): Did these hospices enroll patients inappropriately? Do for-profit and not-for profit hospices differ?
Part 3 (Thu): Digging into the statistics and the way forward
Bruce Scott (@skipbidder) is an academic physician in Ohio, fellowship-trained and board certified in Geriatrics and in Hospice and Palliative Medicine. His hobbies include boardgaming, cooking, and pedantry.
Wednesday, January 8, 2014
Tuesday, January 7, 2014
Right before New Year's Eve, there was a flurry of activity on the Twitter #hpm hashtag (and in my email box). A Washington Post article was being discussed. Many people were linking to the article. These included lawyers and investigative journalists, as well as many professionals from across the hospice disciplines. It also included physicians in various levels of training and subspecialty who do not normally use the #hpm tag. I knew what to expect from some of these Tweeters, who have shown a remarkable ability to get it wrong on anything to do with palliative medicine or pain management. Others were more surprising, however given the poor quality of the article. This article was very badly written. It is quite deceptive, the statistics are frequently wrong or cherry-picked, and the conclusion does not follow from the premises asserted. I was surprised that such a poor piece of journalism should fool so many people who should know better.
Let’s start with the headlines: “Hospice firms draining billions from Medicare” and “Medicare rules create a booming business in hospice care for people who aren’t dying”.
If they had instead chosen a headline of “Hospice firms save Medicare gobs and gobs of money while improving quality of life and honoring patient wishes, but some companies seem to be skimming a bit too much off the top for our liking (all while operating legitimately within the silly rules that we set up)”, then I’d have considerably less problem with the article. However, this would have been an honest headline, and it wouldn’t have generated much buzz. They went for inaccurate and misleading instead. A headline more worthy of the National Enquirer or Weekly World News than the Washington Post.
“Hospice firms” are “draining billions from Medicare”? Really? Draining suggests waste or fraud. According to the article itself, Medicare expenditure on hospice in 2011 was $13.8 billion. Even if we charitably allow that $2 billion is enough to make “billions” truthful, are they really suggesting that one-seventh of the Medicare hospice budget was “drained” away? Hospice saves Medicare money. A lot of it. Even if they don’t approve of the strategies used by some (for-profit) hospices, they presumably aren’t making the argument that Medicare paid more for hospice patients than they would for the same patients not enrolled in hospice. I’m assuming that they aren’t making that argument, because they did not state it explicitly in their article. Also, it would be uncharitable to saddle them with an argument with as much credibility as anthropomorphic global warming denialism.
Even if we were to accept the idea that long lengths of stays in hospice are inappropriate (which I’m not), these admissions are STILL saving money for Medicare. Saving money, not “draining” it. In one headline, they used the phrase “people who aren’t dying”. In the article itself, they say that hospice companies earn more by “recruiting patients who aren’t actually dying” and “some hospice patients prove not to be terminally ill”. The journalists only name one specific disease associated with longer length of stay: Alzheimer’s disease. Alzheimer’s disease is a progressive, terminal illness. It is 100% incurable. No currently available therapy available can prevent progression of the disease. Everyone with Alzheimer’s is “terminally ill”. Everyone with Alzheimer’s is “actually dying”. They will have significantly shorter lives than their age-matched neighbors without Alzheimer’s, and they will die FROM their Alzheimer’s in most cases. The death certificates unfortunately will sometimes not reflect this, since an intensivist or a primary care physician will often list cause of death as “Septic Shock, secondary to Pneumonia” rather than “Septic Shock, secondary to Pneumonia, secondary to Alzheimer’s Disease”. Alzheimer’s is a situation where hospice can make a great quality of life impact as well. Pain is routinely unrecognized and undertreated in Alzheimer’s patients. Hospice helps with this and other symptom management. It also provides a team to help families to understand the natural progression of disease and them through the heartbreaking experiences that they will face regarding loss of cognition, personality change, decreased eating and drinking, and likely infections, which goes a long way to make the situation less traumatic for families. The fact that hospices benefit from longer stays with these patients should be considered a win-win situation. It helps offset the financial losses associated with referrals made at the last minute.
The authors assert that “the hospice industry is opposed to fundamental changes to the payment system”. This is simply untrue. The NHCPO has been calling for changes for years. The AAHPM has as well. Individual hospice (and geriatrics) leaders have been arguing (begging) for rule changes for years as well.
Let’s turn now to the ideas that length of stay or percentage of non-death discharge should be measures by which we gauge appropriateness of hospice enrollment. Non-death discharges are presented as if they are very common. If I didn’t know better, just going by the article, it would appear that non-death discharges are extremely common. Authors cite individual subsets of hospice firms with very high non-death discharges. Note that the authors change in mid-article for some reason from talking about California to talking about Alabama. They give some examples of very high non-death discharges from a subset of one for-profit hospice. When I read these percentages, they struck me as very high, and very strange. These are nothing like any hospice I’ve ever been involved with (and I’ve had significant experience with more than ten if you include my fellowship training). This immediately brought to mind many questions:
1) What are the denominators here?
Small denominators can lead to strange results. If these are small hospice branches, then it is hard to draw any broad conclusions.
2) What was this company’s national average non-death discharge? Did the authors know this? Did they try to find out? If they did know the number, why didn’t they share it?
3) What is the non-death discharge for all hospices nationally?
This was not difficult for me to find. It took seconds to get the NHPCO data. This places the non-death discharges nationally at less than 16%. Why on earth didn’t they report this number for us? They did say “The proportion of patients who were discharged alive from hospice care rose about 50 percent between 2002 and 2012”, but they neglected to include the actual percentages. By failing to do so, they are encouraging us to think it is a much higher figure than it is. This strikes me as deceptive. The fact that national non-death discharge is less than 16% highlights the fact that the high non-death discharge hospices are anomalies. They couldn’t be a very large component without dragging the national rate up to much more than 16%
4) Is there anything particular about Alabama that can explain these figures?
Probably. I’ve got a political opinion about why this might be, but that falls outside the appropriate scope of this post. (Note that the four states named by MedPAC with the highest percentage of over-cap hospices were Alabama, Mississippi, South Carolina, and Arizona. Over-cap hospices were much more likely to have high non-death discharges.)
5) Did patients discharge from hospice because they were getting bad care?
This is an essential question from my perspective. MedPAC thinks it may be an indicator of a substandard hospice. They might be right. If so, then Medicare should absolutely consider altering the rules to address the problem. If the hospices are NOT breaking any current rules, however, then this is a problem with poorly written rules combined with companies who are pursuing profits in a capitalist system. Note that for the specific patient mentioned in the article, Chocolate Blount from Alabama,
“It was definitely good news,” said Bessie Blount, whose father received hospice care from the Monroeville outfit and left after about a year, she said. About three years later, her father, Chocolate Blount, 91, is still alive. “He has good days and bad days,” she said. The family “said they miss the help that hospice provided”. It doesn’t sound like he was getting bad care according to the family.To be continued...Parts 2 and 3 of this rebuttal will be posted later this week.
Part 1 (Tue): Debunking the hyperbolic headlines
Part 2 (Wed): Did these hospices enroll patients inappropriately? Do for-profit and not-for profit hospices differ?
Part 3 (Thu): Digging into the statistics and the way forward
Bruce Scott (@skipbidder) is an academic physician in Ohio, fellowship-trained and board certified in Geriatrics and in Hospice and Palliative Medicine. His hobbies include boardgaming, cooking, and pedantry.
(1/8/2014 - Edit - Added back in links that were lost when initially published. Fixed acronym for NHPCO. - Ed. Sinclair)
Tuesday, January 7, 2014
Tuesday, December 31, 2013
As you finish out the year this evening, you may be reminded that you still need to get a few more tax deductible charitable contributions in before the clock strikes midnight. How do I know what you are thinking? Because the data shows that New year's Eve is one of the most beneficial days for charitable giving.
So as you are planning your last few donations, I want to urge you to consider donating to the American Academy of Hospice and Palliative Medicine's Shaping the Future Campaign. To honor the 25th anniversary of the Academy and help impact the next 25 years, the Academy has embarked on it's first every charitable campaign. The goal is $1.5 million dollars to help with advocacy, education and workforce issues.
I have been lucky enough to co-chair this campaign along with Dr. Ira Byock and Dr. Christine Ritchie. When I heard about this campaign starting, I knew I wanted to be on it. Over the past decade I have seen all the good work the members of AAHPM have done collectively. But the majority of this has been done on a volunteer basis with very tight budgets, and with participants always wishing they could do more. As all of us clearly understand, to maintain inertia and dream big you need resources. We have great members, who are smart, articulate and passionate about what they do. We have some resources, but the 'dream big' ideas can get pushed aside for the more tactical day to day issues.
So if you have big dreams for what the future can bring to patients and the professionals of hospice and palliative care, I urge you to donate tonight to the Shaping The Future Campaign. I have not made a direct ask to you, the Pallimed readership, until right now. No matter how big or how small, please take this opportunity to invest in yourself and your profession.
Tuesday, December 31, 2013
Monday, December 23, 2013
It is really hard to see a randomized controlled trial conclusion that does not support your previously held view of medical practice or education.* Yet it's vitally important to pay close attention when this happens, and try to deeply understand what's going on so you can change your practice, if necessary. So I'm here to pay close attention (and be rather long-winded in the process).
But the JAMA RCT took it a step further with an attempt to determine if the educational intervention would positively impact patient-centered outcomes.
In short: No benefits found in this study. No increase in patient, family, or other clinician rating of quality of communication surrounding end of life care. No improvement in mental health outcomes. In fact, patients exposed to the intervention group's trainees experienced a small but statistically significant increase in depressive symptoms. Let's take a closer look at the purpose and methods of the study.
What's the purpose of the educational intervention?
The educational intervention is designed to give trainees skills necessary to conduct pivotal conversations- to ensure that patients and their families understand where things stand medically (and where things might be going), empathize and provide support when the news is serious, and to align treatments with patient values and goals. While I'm not familiar with the specific simulations used in the intervention, from other experiences with this method, the simulations usually feature patients who are at a pivotal point with their health. A new or relapsed serious illness. Worsening of a condition, indicating that treatments aren't working very well. A transition to the actively dying phase.
Was patient selection appropriate for this study?
All of the patients included in the study had serious illnesses (25% outpatients and the rest inpatients), and one might anticipate that each patient would need to have conversations about serious news, goals of care, and end of life care at some point along their disease trajectory. But at every visit? Likely not. Some of the skills taught could be applied at any visit, but would the full benefit of these skills be felt if the patient was stable without troubling new issues? Could patient stability reduce the importance of applying these skills at many of the visits?
So, how many of these patients were actually at a pivotal point in their disease trajectory during the study encounters? We don't know, exactly. Here's what we know:
- Patients in hospice care were significantly less likely to return surveys (only 26% of patients in hospice care returned surveys). We don't know how many patients in each study group were in hospice or on the verge of hospice referral,which represents one of many possible pivots in a patient's health and care.
- When there was documented communication about end of life issues, patients were significantly less likely to return survey (34% estimated return rate)
- Families of the 16% of patients who died during a hospitalization were dramatically and significantly less likely to return the survey (a measly 29% when the patient died vs. 78% for families when the patient survived hospitalization).
- Among respondent patients who rated their health status as "poor", quality of communication scores were higher in the intervention group.
We have no idea what the subject of the conversation was during each visit. Perhaps the control group had sufficient communication skills to navigate routine patient visits and achieve scores comparable to the intervention group. Reviewing the QOC tool, many of the skills on which patients/families were asked to evaluate trainees are basic skills (making eye contact, etc). Maybe there were enough routine visits to drown out the pivotal conversation visits in the study. There's no way to know.
Confounders for the measurement of trainee skill
Another variable which was not reported was the timing of when patient/family/clinician evaluators filled out their surveys. It's entirely possible that by the time the evaluations were filled out, patients and families might have remembered the face of the trainee. However, as time elapses from the visit, recall bias likely only grows. Think of the number of factors which could impact the rating- the plethora of other clinicians the patient could have seen during the same hospitalization or in the interim. One inclusion criteria for the study was patients who had palliative care consultation, but it's not known how many of the patients received this. You could imagine that being a confounder for patient satisfaction! Also, consider the conflicting messages patients and families receive and the illness experience itself as other confounders.
The depression result
First off, it's not clinically significant by the pre-defined minimial clinically significant difference of a 5-point change in the PHQ-8. Granted, it was statistically significant, with a covariate adjusted 2.2 point increase between the groups.
What to make of this clinically insignificant increase in depressive symptoms? We know sadness comes with some of the messages we have to give to patients and their families. But none of us want to make someone more depressed, if we can help it.
PHQ-8 was measured at a a single time. And we don't know when that was, and whether timing varied for some reason between the intervention and control group. But let's assume measurements occurred at exactly the same time in each group.
We have empirical evidence to suggest that the elements of grief have "average" trajectories, with depressive symptoms being an expected element of that grief. Assuming that trainees in the intervention group were having more end of life discussions (a leap, because we don't know for sure), is it possible that the "arc" of the anticipatory grief experience was modulated somehow? More depression earlier on, with greater acceptance to come when the control group was hitting the peak of their depression?
This is merely a hypothesis. But I think simultaneously while we ponder the possibility of harm, alternative hypotheses need to be considered as well.
How might this mesh with another highly regarded communication intervention trial?
Previously, Lautrette (and Curtis) et al. demonstrated the effectiveness of a communication strategy at reducing depression, anxiety, and PTSD symptoms in bereaved family members three months after the loss of a loved on in an intensive care unit. One of the core interventions was a structured family meeting that involved clinicians using the VALUE mnemonic. While this particular mnemonic was not central to the educational intervention in the JAMA study, the intervention helps trainees gain the skills necessary to accomplish the goals central to the mnemonic. Why the difference in outcomes, then? I hypothesize that it comes back to patient selection. All of the patients in Lautrette were clearly at a pivotal point in their care when the intervention was applied.
Anecdotes remain powerful
A critical care fellow sends an email noting that after an impromptu late night family meeting, the nurse commented on how smoothly the meeting went and the resident told her he hoped he could communicate like that one day. Another fellow sends a text with a report that in a difficult conversation, he made a statement admiring the care the family gave to the patient, and the emotionally charged family calmed down, becoming more able to focus on the difficult conversation at hand. You observe one of your fellows find a new way to align herself with a patient asking for treatments that won't be beneficial, and she remarks afterwards about how she wasn't doing that just a few weeks before, and how useful she has recently found the new technique.
All of the above fellows participated in a communication course conducted using the Vital Talk teaching methods studied in the JAMA RCT. Multiple studies (including the recent JPM study linked with this RCT) have now demonstrated change in behavior from this intervention. It's possible that the change is not long lasting. If we were to set aside some of the methodological issues of the JAMA RCT and believe the conclusions (no improvement in patient outcomes), it's possible that the trainees didn't have adequate reinforcement to change their behavior permanently. It's also possible that some of the anecdotal success comes from viewing this as an iterative process with high level learners who are a different audience than the intervention group of the study. For more on that and further commentary, here's Drew...
Like Lyle, I have been trained in and use the techniques used by the Oncotalk/Vitaltalk crowd, and, via first-hand experience, strongly believe they are effective in improving the quality of communication. I watch communication skill acquisition happen rapidly, in a way that is nearly giddying (as an educator) to watch. In my own fellows, I perceive that these improvements have a lasting effect on the level/quality of my fellows' communication skills. So, for me, it was disheartening to see such a well-designed study of these techniques be so 'negative.' Admittedly, my first-hand experience with this is has been so positive that I find it nearly impossible to believe that the techniques aren't effective.
That said, as I have thought about this investigation, one of my conclusions is that perhaps the reason I perceive the techniques to be so effective is that I have been using them, myself, to train palliative care fellows (not medical interns). My fellows 1) are physicians who are very, very motivated towards excellence in physician-patient/family communication, and 2) after the Vitaltalk-style workshop they continue to have close supervision and feedback from me and my faculty on their communication. Effective, empathetic, patient-centered communication is a huge, explicit part of their curriculum, as opposed to ineffective, aloof, and pathology-centered communication being a huge part of the "hidden curriculum" as it is for too many other medical trainees. I think it's possible that those phenomena may, in part, explain the disconnect between the apparent ineffectiveness of the Curtis trial vs my own experience with these training methods.
I'll also note that I don't necessarily believe patients are the best judge of physician communication quality. Certainly, patient satisfaction with physician communication cannot be the sole measure of quality (note: I'm not suggesting that the Curtis trial judged the quality of communication uni-dimensionally). I am reminded of the CanCORS study, which showed patients with metastatic lung or colon cancer who did not understand that their chemotherapy was not going to cure them, were more satisfied with their oncologists' communication than patients who were better informed. Sobering stuff.
Conclusion
While the results of this trial are disappointing, the negative results may reflect how challenging it is to study patient centered outcomes of educational interventions. This study also gives us an opportunity to reflect on how to define the patients who benefit most from communication training interventions, when the benefit is most likely to occur, and which trainees/practitioners might be in the best position to receive the intervention. No doubt, there are other interventions which may improve clinician communication in pivotal conversations, and we should also reflect on ways to improve the studied intervention. As a palliative care community, we should be interested in a multi-faceted approach that involves changing both practitioner behaviors and early patient/family preparation for pivotal moments near the end of life. Evidence supports the notion that we can help trainees grow their communication skills. Fortunately, we don't need FDA approval to disseminate medical education interventions which help trainees develop skills that most would agree are valuable. This intervention remains an integral part of the equation.
For other perspectives on this study, see the JAMA editorial by Chi and Verghese, Vital Talk's commentary, and Geripal's commentary.
*Disclosure: Lyle currently receives funding from an IU Health Values Grant to use these teaching methods with various fellowships at IU School of Medicine. All opinions expressed in this post are solely those of the authors.
Monday, December 23, 2013
Wednesday, November 27, 2013
Every one always talks about how we should bring up important topics like advance care planning, end-of-life wishes and health care values with our family. But no one really tells you how. So in preparation for the holidays we bring you many different ways to bring up the conversation since you will be seeing family and friends who may have a say in what happens to you if you are never able to make your own health care decisions. Some of these were collected from the Pallimed Facebook page, which we encourage you to come like, share and participate in. We present a variety of ways to get to the topic: some humorous and edgy, some will work for you, others clearly won't, but we wanted to provide a range of scenarios!
“Do you think this delicious turkey had a living
will?”
“All I want for Christmas is for you to tell me your
thoughts on artificial life support and your ideas regarding an acceptable
quality of life. Fa-la-la-la-la---la-la-la-la.”
“Whoever assigned their Health Care Power of Attorney this
year gets pumpkin AND apple pie for dessert!”
“The holidays can be so depressing sometimes.”
“You want to know what increases the risk of depression? Not
knowing the wishes of your loved ones when they get sick. It’s a fact.”
“I always wondered if Katniss did any advance care planning
when she volunteered for The Hunger Games.”
“I'm super excited to meet your parents for the first time. Are you the health care power of attorney for either of them?”
"Wow, that tackle looked like he might have a concussion. I hope he has talked to his family about his thoughts on medical care before this game. Dad, what would you want if you couldn't make your own decisions?"
“Do you think Kim Kardashian is the health care power of attorney for her mom?”
“Deck the halls with boughs of holly? Ha! How about we deck
these halls with some advanced care planning documents, people!”
“Mom, where are the coupons for the Black Friday sales?”
“On the fridge next to my health care power of attorney.”
“Anyone else ever wonder how things may have turned out
differently for Walter White if he’d had early referral to palliative care
services?
“I know Uncle Bob is not here with us tonight (Bless His
Soul), but I’m thankful he shared with all of us his wishes for when he got
sick.”
“Do you know what you want for Christmas?”
“How about his and her living wills, wrapped in a health
care power of attorney. Then we can talk about our values and thoughts on
aggressive medical care over hot cocoa by the warm fire?”
“Well only if I get to tell your Mom that I’m your
health care power of attorney!”
“Just so you know if I choke on this turkey I would like a
sky burial where my body is fed to the birds. It seems only fair.”
“Hey everyone, time to cut out paper snowflakes with my
previous advance directives! I just updated them last night.”
“Mom, I can't believe our cat died.”
“Well, kitty had an advance directive, and it said not to put him in a kitty nursing home or else he would haunt me forever. Now what would all of you at the table haunt me for if I didn't follow your wishes?”
“Did you hear about that reporter who tweeted from his mother hospital bed as she lay dying? Do you want me to tweet about that mom?”
“What’s on your bucket list? Mine starts with an advance
directive.”
“I read this blog post where someone was trying to think of
clever ways to bring up advance care planning and end of life issues at holiday
dinners. Let’s try to think of some.”
“Hey, do you have a second?
I wanted to talk to you about something really important because I love
you.”
Please share with us your holiday story of advance care planning in the comments!
Happy Thanksgiving and Hanukkah from us at Pallimed!
Wednesday, November 27, 2013
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