It is amusing and annoying to be complaining about the costs of hospice care, when in fact hospice patients are forgoing the ER visits, hospitalizations, specialists' visits, procedures, and many medications that Medicare would instead be covering if not for the patient making a decision to pursue comfort care only. So, what was the cost SAVINGS to Medicare by having these people on hospice, even though they stayed on longer than usual? Alot.- ras

I don't even believe desperate old people are gaming the system via hospice. But if they are, it's because this country has utterly failed them, taken payroll deductions for a lifetime in exchange for medical care in old age, and then only given the kind of medical care 70-year-olds need, not 90-year-olds. Shame on us. - jane gross

Hospice is a critical service that is offered to all. It is necessary, compassionate, and well run. So, if we discontinue it or cut services, we are a nation without merit and compassion. We will not only be third world, we should not be in this world. - Julie

The article disingenuously ignores this broader care issue while it exploits an example of an Alzheimer's patient. Please, NY Times, get perspective on the bigger picture. Help the US face its fear of dementia that keeps us in denial and prevents us from preparing to fight a huge healthcare tidal wave. Take more leadership and make a difference. - Suzanne

So it's too expensive to have an MD check on hospice patients once every six months? The health care industry has become even more shamelessly and barbaricly greedy than I thought. - Cowboy Marine

A few items about palliative care in the ED, prognosis of delirium, and whether antibiotics improve symptoms in pneumonia.  See below the fold.  I'm traveling next week, so probably won't blog again myself until later on in August.  Summer, ugh, is rapidly fading....

• Greater ICU use in the last 6 months of life
• Larger size, and
• For-profit ownership vs government ownership

Archives of Internal Medicine recently had a study about the influence of nursing home culture on rates of tube feeding of patients with advanced dementia. This is a qualitative/ethnographic study of two NH in South Carolina, both within the same region, and both selected because one had very high rates of TF of patients with dementia (41%) and one had a low rate (11%) (they note the high one was actually the 4th highest in the region - the other 3 wouldn't participate in the study).

The researchers observed care in the NH (how mealtimes are structured, who does what, etc.) and interviewed multiple providers at each site (nurses, CNAs, speech pathologists, administrators, dieticians, etc.). There were important differences between the two nursing homes: the 'high use' NH had a larger proportion of African Americans (52% vs 9%), Medicaid patients (80% vs. 28%), no dementia unit, and poorer quality indicators (using CMS data). Both NH were part of for-profit chains.

As this is a qualitative study the findings are difficult to summarize, but generally come down to: the low-use facility was nicer, feeding was better staffed with better trained CNAs, and multi-disciplinary shared decision making was common. The article is a thrilling/appalling read as you hear the differences between the two NH:

Both NHs had interdisciplinary teams to identify and respond to residents' weight loss but differed on team composition and family role. The low-use NH team included the dietary technician, SLP, director of nursing, administrator, nurses, activity director, social worker, and on-staff physician. The physician evaluated residents who lost weight and discussed his findings with family. His attitude reflected a preference for hand feeding over tube feeding. He said, "I am subtly negative, or not so subtly. I tell [the family] that [a feeding tube] has no effect on mortality. It just changes the complications." The social worker also facilitated family meetings to determine how the options of hand feeding vs tube feeding aligned with the goals of care.

The high-use NH team was composed of the dietary technician, SLP, and nurses. Nurses were responsible for notifying PCPs of weight loss, obtaining orders for nutritional supplements, and notifying families about feeding problems. The social worker denied having a role in feeding decisions. An NP reported that by the time she was consulted, "department heads" had already approached families to suggest tube feeding. The NP found it nearly impossible to "undo" family beliefs that feeding tubes were in residents' best interests. The NP reported that dehydrated residents were often admitted to the hospital and returned with feeding tubes.

NEJM has an important paper about the natural history of advanced dementia. The data come from a prospective study (2003-7) of patients with advanced dementia residing in 22 nursing homes in the Boston area. 'Advanced' dementia here means patients with a Cognitive Performance Scale (part of the MDS) of 5 or greater. A CPS of 5 corresponds to a mean Mini-Mental State Examination of 5 (+/- 5 SD): ie, the vast majority of these patients then had a MMSE of less than 10. Inclusion criteria also included 'profound cognitive deficits (inability to recognize family members), minimal verbal communication, total functional dependence, incontinence of urine and stool, and inability to ambulate independently.'

The data were collected in a variety of ways in the study: after enrollment incident complications were determined by chart review; pain and dyspnea, agitation, and aspiration were determined by regular interviews with the patient's NH care providers and nurses. One of the categories they measured by chart review was 'eating problems' which they defined as: 'documentation of weight loss, swallowing or chewing problems, refusal to eat or drink, suspected dehydration, and persistently reduced oral intake.'

~320 (56% of patients who met the inclusion criteria) were enrolled: mean age 85 years, 89% white, 85% female, most with Alzheimer's-type dementia. The median time subjects had lived in a NH was 3 years.

They present some general survival data, as well as data on 'complications' during the study. Median survival was 478 days, with 54% of patients dying in the 18 month study window, and 25% dying within 6 months. So - a sick group of people - although this doesn't tell you much more since patients were enrolled regardless of how long they had dementia or had lived in a NH.

But things get more interesting. Many patients had dementia associated complications, which were associated with worse prognoses. 41% had pneumonia (leading to a 47% 6 month mortality after an episode of pneumonia), 53% a febrile episode (45% 6 month mortality), and 86% had an eating problem (38% 6 month mortality). These mortality rates were much higher when compared to patients who did not have those 'complications.' In fact the 500 day survival for the (small number of) patients who had no eating problems was over 90%, suggesting to me that eating problems are the hallmark of the 'terminal phase' (exceedingly likely to die within 2 years) of dementia.

Pain, agitation, and dyspnea were all quite common, 'burdensome interventions' (parenteral therapies, hospitalizations, ED visits, tube feeding, etc.) occured in 40% of patients in the 3 months prior to death. Only 30% of patients who died were enrolled in hospice. Which, yes, seems appalling but also reflects the reality that 'hospice-like-care' frequently occurs in NH for patients with dementia without formal hospice enrollment.

Truly appalling was the only 18% of proxies who reported receiving prognostic information from a physician, and only 32% reported receiving counseling about the expected complications of advanced dementia. Breaks your heart. Despite this, about 80% of proxies reported that they thought they understood the expected complications. Subjects whose proxies reported knowing the expected complications of dementia received fewer burdensome interventions in the last 3 months of life, as did those who thought their loved one had less than 6 months to live. They note that reporting a prognostic conversation with a physician did not make any difference in rates of burdensome interventions that they could tell: it was the expectation of a short prognosis and the knowledge itself of complications (regardless of where that knowledge came from) which were associated with the different outcomes.

So, further corroborating data that knowledge of prognosis (in its broadest sense - not just time but what is expected to occur) changes care at the end of life. What excites me about this and similar findings (and there has been a fair amount of research indicating that prognostic knowledge is associated** with better care at life's end) is that it is something we can change. Or, it seems like something we can change, as at least these data indicate we continue to do a piss poor job of telling people what is likely to happen to them or their loved ones. Frankly, prognostic knowledge is one of the only things I know of which has routinely been shown to effect end of life care for the better (I expect to be shouted at in the comments for this statement) which makes me wonder that all the fancy palliative/end of life care quality measures that have recently been promulgated should be reduced to: tell patients what the future likely holds for them, offer options.

**Getting off my bandwagon for a moment, one should reflect on the 'associated' there. As with the Coping With Cancer Study (see 7th paragraph down), there is always the possibility here that this association can be accounted for not by causation (prognostic knowledge --> different decisions --> better end of life care) but by a confounder which makes patients/families much more open to talking about prognosis/reporting prognostic knowledge/conversations/impressions. That is: confounder --> more likely to engage a clinician about prognosis and/or report in a research environment prognostic knowledge + also more likely to choose 'gentler' end of life care --> better end of life care. What that confounder is I'm not sure exactly but I wonder if it's some generalized 'more comfortable with death and dying and talking about it.' The question I'd like to see answered is one that can get at causation. That's unlikely to happen in a controlled trial (at least with real-life terminally ill patients) of course.

All this aside, the more data we have showing that prognostic knowledge changes outcomes (improves them) the better, and the studies like this not only sharpen this knowledge for clinicians but for patients as well (see here).

See also this associated and very pro-palliative care editorial.
Our pals at GeriPal (funny) blogged about the same article as well and talk a little about the Medicare Hospice Benefit and these findings.
The same NEJM issue also had a fascinating study on dialysis in older patients and next week I plan on blogging on that and another paper on dialysis in advanced age. Mag Citrate will return; I know how much everyone loves it so.

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, stresses that psychiatric drugs are, first and foremost, psychoactive drugs. They induce complex, varied, often unpredictable physical and 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 suppress the manifestations of certain mental disorders. The disease centred model of drug action developed in the 1950s and 1960s and replaced a drug centred understanding of how psychiatric drugs worked. For example, the early investigators of neuroleptic or antipsychotic drugs suggested that they worked by inducing a neurological syndrome consisting of physical restriction and mental symptoms such as cognitive slowing, apathy, and emotional flattening, which resembled Parkinson’s disease. These effects 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 which the drugs produced their intended outcome.

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 clinical standpoint, this study suggests that over 12 months, patients with AD who become delirious experience the equivalent of an 18-month decline compared to those who do not experience delirium.

The Journal of the American Medical Directors Association has a paper discussing tube feeding in advanced dementia, and why the practice still continues despite lack of evidence that it is medically helpful. The discussion is really about the nature of caring, what it means for families to care for a beloved family member with dementia, and how tube feeding interacts with that. This is one of the best discussions of the emotional landscape of the issue that I've read, and the crux of their argument is as follows:

But perhaps one overlooked reason that many loving families and caring physicians continue to opt for artificial nutrition is that the case for feeding tubes is a moral one and not a scientific one. Clinical experience suggests that family members who express concern about “starving” their relatives to death may not be asking for more data. They may not be interested in the relative merits of randomized versus observational studies. They are unlikely to be persuaded by claims that feeding tubes not only fail to prolong life but also are ineffective in preventing aspiration pneumonia or pressure ulcers. These medical outcomes, which can be scientifically measured, are of interest to physicians; it is not at all clear that they are important to families. From this perspective, families will derive little reassurance from a new, better designed study or a multipronged intervention that simultaneously addresses each of the factors that has a small but statistically significant effect on PEG usage. What may be at issue for families is how best to demonstrate caring, and caring is not readily amenable to empirical study.

JAGS has a paper on polypharmacy/inappropriate medication use in patients with dementia receiving palliative care. More or less it's based on a consensus project involving geriatricians asking them what drugs are appropriate or not for patients with severe dementia receiving palliative care. That list was then applied to 30 some patients residing in long term care facilities and it was found that nearly a third of them were receiving at least one 'never use' drug. What is interesting to me is the actual list of drugs and what categories they were placed in via the consensus process.

First, statins and dementia meds (acetylcholinesterase inhibitors, etc.) were on the 'never use' list, along with chemotherapy. While I'm all for not using these agents in patients with severe dementia this very much implies an either/or model of palliative care being employed by these clinicians (as opposed to a concurrent care model; i.e. patients receiving palliative care means the patients are only receiving palliative care, so to speak).

Next, opioids ('narcotics') were on the 'always appropriate' list which is the first time I've seen such a listing for them on any sort of geriatric drug profile.

Last, and most interesting, were the drugs for which there was no consensus: the panel was too divided about their use. These included aspirin, muscle relaxants, 'sedatives and hypnotics,' and CNS stimulants. Clearly clinicians are divided over the use of these drug classes. Myself, looking over the list, found myself going "meh," or "no way" to a substantial number of the drug classifications (the above 4 for me would be rare, rare, sometimes, sometimes) . All of this I think bespeaks how idiosyncratic these decisions can be: the differences across clinicians as to what constitutes a worthless treatment, what is considered harmful or neutral (statin vs. aspirin - aspirin vs. clopidogrel [which was on the never use]), etc. Antiestrogens were on the never appropriate list (although they can have some analgesic/palliative benefit in breast cancer); they would have made my rarely appropriate list.

1)
Continuing the implosion of antipsychotic use for 'behaviors' in patients with dementia, Archives of Internal Medicine published a retrospective cohort analysis about 30 day mortality or hospitalization in patients prescribed antipsychotics (they were higher). All patients were living in nursing homes or at home (none were hospitalized). This is not the greatest study on this topic: increased mortality has been demonstrated in randomized controlled trials of atypicals (i.e. we don't necessarily need retrospective cohort studies). What this one adds is that it looks at both typicals and atypicals and finds that adverse outcomes were higher for both (and a little higher for typicals than atypicals). That is - this supports the idea that this is a class effect of all antipsychotics and not just newer ones (in which the problem was first identified).

2)
Cancer has a discussion addressing hope in the face of a terminal illness. Its focus is that period of time between a patient\family member hearing life-altering news (the cancer is incurable, there are no more treatments that will slow the cancer down, etc.) and them 'accommodating' (that's my language) that news. They describe this time as one in which hope undergoes a transformation (from hope to a cure, etc. to a painless death, or a few good months with the kids before things get bad again, or whatever it is) and which can take quite some time. None of this will likely be news to most readers of the blog, but this was one of the only articles I've read in a long time which focuses on and analyzes specifically that transition - what that transformation actually entails. A good one for the teaching file. I liked this quote about bedside manner:

Here, we focus on the cognitive aspects of hope management, but we also want to emphasize the profound importance of the behavioral and affective components - of the physician recognizing and responding to the patient's emotional condition. When the physician forms an empathic emotional connection with the patient, it conveys an unspoken but important message of caring; the physician's steady presence is an almost physical shelter in the emotional storm that often accompanies impending death.

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

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