Monday, February 4, 2008

Race and hospice revocation; COPD; Nabilone for pain; Much more

This is my first post for a couple weeks and I have amassed a large backlog so my next few ones will likely focus on a single article and then mention others only in passing.

Thanks for everyone who said Hi in Tampa, or who came to the happy hour (M. sorry about the loud music - it's too bad Wham! is not your cup of tea). Tom Q - we missed you.

A quick note about the Blogging on Peer-Reviewed Research and Research Blogging system that we have alluded to before. The Research Blogging website is now officially up and running. It is, among other things, an aggregator of all blog posts by bloggers who use the BPR3 standards - it's an organized attempt to promote 'serious' academic blogging & we are hopeful it will be successful.

ResearchBlogging.org1)
Archives of Internal Medicine has published a fascinating article about race and hospice revocation to pursue 'aggressive' care. It is a retrospective analysis of data from a multi-state hospice group and compares characteristics of white patients who revoked their hospice enrollment to pursue aggressive care (the hospice agency prospectively gathered data on reason for hospice revocation at the time of discharge).

In some ways, simply the epidemiologic data are interesting: over 5 years 167,000 patients were discharged alive and only 2.8% of these were to pursue aggressive care, a median of 22 days after enrollment. This is, then, a rare event. African-American patients were more likely to disenroll to pursue life prolonging care (4.5% vs. 2.5% of whites), and this difference survived controlling for age, income, diagnosis, and other demographic variables. Length of stay, age under 65 years, non-cancer diagnosis, and not having an identified caregiver were also associated with revocation to pursue life-prolonging care.

What I found most notable was the 1 year survival amongst those who revoked hospice to pursue life-prolonging care: 48% (for both African-American and white patients). Those who died after revocation did so relatively quickly (~40 days), but almost half were alive at the end of a year. The authors note that those 40 days of survival are only a couple weeks longer than median survival in hospice, suggesting that those who died probably didn't have their lives prolonged much by revoking hospice. The relatively long survival of the others suggest that the decision to enroll in hospice was wrong (at least from a prognostic perspective). This data may be out there, but I know of no other good study looking at long-term outcomes for those who voluntarily revoke their hospice benefit. Of course, there are other important outcomes than 1 year survival, and we don't know what those years looked like, but that's for another study.

The authors discussed possibilities as to why African-Americans may revoke hospice care more than whites (and thankfully avoid pathologizing these decisions as due to 'mistrust' which implies a sort of irrationality). They do propose this explanation, which is pure speculation, but quite novel I thought:

"However, because African American patients are less likely to participate in advance care planning, they may spend less time thinking about or discussing their preferences for end-of-life care before enrolling in hospice. Because hospice care facilitates advance care planning, hospice enrollment may provide African American patients with the opportunity to solidify and discuss their treatment preferences. When these preferences conflict with the hospice philosophy of care, they may withdraw from hospice."

Johnson, K.S. (2008). Racial Differences in Hospice Revocation to Pursue Aggressive Care. Archives of Internal Medicine, 168(2), 218-224.

2)
Clinics in Chest Medicine recently had a review on 'end of life considerations' for chronic lung disease (mostly COPD). It's a general overview, well written, and notable for its very practical, straight-forward discussion of end of life communication towards its end. It is quite matter of fact about things, and directly addresses physicians' own discomfort in discussing death and dying (something that is often missing from such discussions; it's great to see this in a journal like this). This paragraph was also appreciated:

"Frequently, part of the decision for patients with lung disease is whether they want to receive CPR in the event of cardiac arrest. In our opinion, in helping patients make this decision, it is important that advanced cardiac life support not be broken into components but rather presented as a package. Breaking advanced cardiac life support into components (chest compressions, antiarrhythmic drugs, vasopressor agents, intubation) makes these decisions unnecessarily complex and can lead to an absurd resuscitation status, such as compressions and all drugs but no intubation."

3)
BMJ has a trial of a cannabinoid vs. an opioid for chronic neuropathic pain. It is a randomized, blinded, placebo controlled cross-over trial which compares nabilone (a synthetic cannabinoid) with dihydrocodeine (an opioid unavailable in the US about which I know little). Each patient was randomized to 6 weeks of the study drug and then crossed over to the other drug after a 2 week washout; patients could go through a dose titration protocol for each drug as needed for pain control. Both groups had lots of drop outs and the authors present per protocol analyses mostly. Dihidrocodeine did a little better than nabilone, although frankly both come off as crummy analgesics (few in either group achieved a 1 point drop in their pain on a 0-10 scale). Not a great endorsement of either cannabinoids or weak opioids for neuropathic pain.

4)
Very briefly:

  • Social Science & Medicine has a recent article about hospice & Medicare cost savings (it's a case control study and tries to establish what is the ideal length of time for someone to stay in hospice, from a Medicare cost savings standpoint - the answer, thankfully, is much longer than the median hospice stay).
  • JAMA recently had a commentary about definitions of disability. It was placed in the context of an 'impending wave' of population disability. There was something in the way the authors discussed how disability is conceptualized and medicalized which seemed, to me, consonant with how death is medicalized. I'm not suggesting this is a perfect analogy, at all, but thought I'd throw it out for the more anthropologically minded reader. See here:
    • "By the late 19th century, the medical model of disability was firmly entrenched. "The medical model views disability as a problem of the person, directly caused by disease, trauma or other health condition. . . . Management of the disability is aimed at cure or the individual's adjustment and behaviour change. Medical care is viewed as the main issue." The medical model thus built upon 2 assumptions: first, that individuals should strive, largely through their own efforts guided by physicians, to overcome disabilities; and second, that physicians know what is best for patients. Both assumptions often made disability a lonely state—defined and frequently stigmatized by others, with individuals required to "cheerfully and unselfconsciously" make their own "good adjustment."
  • Radio Lab, a public radio show which is usually about science, thought, and Big Ideas, recently put out a podcast about music written for a morgue of sorts (a viewing chamber at a hospital for the family to see the recently deceased). You can listen/download here.

7 comments:

Frances Shani Parker, Author of "Becoming Dead Right: A Hospice Volunteer in Urban Nursing Homes" said...

My comment refers to this statement:

“The authors discussed possibilities as to why African-Americans may revoke hospice care more than whites (and thankfully avoid pathologizing these decisions as due to 'mistrust' which implies a sort of irrationality).”

I am an African American who supports the hospice philosophy. There are various reasons why many of us revoke hospice care more than whites. The “mistrust” factor, which is historically based and documented, is a valid one. The real “irrationality” lies within a healthcare system that continues to be plagued with racial-ethnic disparities.

Drew Rosielle MD said...

Frances thanks for your comment. My feeling is that a lot of the rhetoric about trust has an underlying flavor to it of implying irrationality on the part of African American patients: if only 'they' would trust us we could give them the care that they 'should' be receiving. While trust is an issue, to be sure, I'm not sure it's irrational; and it also can undermine the possibility that the issue may be one of a straightforward difference in emphasis in cultural values surrounding what is good, appropriate care for the dying, as opposed to mistrust.

I'm curious as to your thoughts on this further.

BTW to other readers who haven't seen Ms Shani Parker's blog it's at:
http://hospiceandnursinghomes.blogspot.com/

Frances Shani Parker said...

Mistrust has become embedded in the African American culture as a coping response to a long history of institutionalized racism. It is only one of several cultural values impacting decisions on what is appropriate care for the dying. Religion, family, geography, etc. all play roles. People make their decisions based on what they feel best meets their needs.

Regarding the statement “If only 'they' would trust us we could give them the care that they 'should' be receiving,” the responsibility for changing mistrust in healthcare rests with the system that created it. The system includes all the people in it, regardless of what jobs they do. This is not only a healthcare issue, but also a moral one.

Drew Rosielle MD said...

"the responsibility for changing mistrust in healthcare rests with the system that created it."

Agreed. Frances thanks for your follow-up: can you email me at drosielle {at} gmail dot com. I'd like to talk with you about a project I'm working on & I can't find your email.

Christian Sinclair, MD said...

One of the things that I have never seen well explained in any medical article on this topic is the apparent difference in where the trust lies between the health care system and the African-American community. On one hand, you can observe that African Americans mistrust the health care system to advocate for the most aggressive medical care and hopefully the best outcomes. On the other hand there is a significant amount of trust from the patient to the physician/nurse/health care system to perform whatever task necessary to be aggressive. I am not sure if what I said comes thru clear, but basically the mistrust may not lie in the actual provision of health care but the view that health care is being withheld.

For example, a patient may not trust the surgeon's recommendation to not perform a surgery, and therefore insists the surgeon perform the surgery. The first part indicates lack of trust in the surgeon's decision making/advocacy, but the second part indicates trust in competency of the surgeon. Has anyone seen this concept explored in the literature?

Daniel Goldberg said...

Drew,

On the social vs. medical models of disability, I refer readers here:

http://www.medhumanities.org/2006/11/social_model_of.html

Thomas Quinn, APRN, CHPN said...

Hi Guys,
Great post & interesting F/U discussion on race & hospice/medical care. And I missed me in Tampa, too.

I'm commenting on the nabilone vs opioid piece. In my opinion, your last sentence (RE: "weak opioid") says it all. It seems a little silly to me to be studying, at this stage of the science, a weak cannabinoid vs a weak opioid for neuropathic pain. All indications from clinical practice are that strong opioids, at higher doses than would be "expected" for nociceptive pain, are needed for neuropathic pain. So why even conduct a trial with a weak opioid? In addition, the relatively scant but increasing literature on cannabinoids for pain don't show a strong association with successful treatment of neuropathic pain. Even by pain study standards, this was a pretty small study (N = 96). A critical editorial accompanying the study states "Before embarking on large scale trials designed to establish who will benefit most from an intervention, investigators should first ensure that trials demonstrate internal validity because failure to do so threatens to undermine the very concept of any new treatment. Even if a subgroup of patients might have benefited from nabilone, the current study design was not powered to identify them." Patients were allowed to stay on any other analgesics they were already taking (which is appropriate), but it would have been nice if they included a list of those drugs. Also, they pretty much took all comers--results were not stratified by specific syndrome. All in all it was disappointing; not in the sense that they had a negative result--I think that should have been anticipated. But the design was weak and a lot of time & energy went into something that predictably would not add much to our clinical knowledge.

 
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