Mastodon Endobronchial valves; Going home; Advance directives; Uremia; 'Unfortunate' ~ Pallimed

Sunday, October 7, 2007

Endobronchial valves; Going home; Advance directives; Uremia; 'Unfortunate'

BMC Pulmonary Medicine has an article about the 'endobronchial valve for emphysema palliation trial' (VENT) trial (free full-text). (Yes, that's the endobronchial Valve for Emphysema palliatioN Trial.) The valves are placed bronchoscopically in select regions of the lung (ones with large bullae for instance) and allow air to exit but not enter. This is being proposed as a less-invasive and thereby less-morbid equivalent to lung reduction surgery. (The reason these are thought to be helpful is that moving air in and out of a few large, emphysematous bullae - instead of millions of tiny, healthy alveoli - wastes a lot of energy and doesn't contribute meaningfully to gas exchange.) The trial is an open, randomized, controlled (medical management) trial of advanced COPD patients. The primary outcome was FEV1 and 6-minute walk test, although quality of life was measured also. The BMC article itself is actually just about explaining the protocol and rationales behind it, but it is a nice introduction (with pictures) of the concept. (It also has a nice discussion, for you EBM fans out there, of the problems of doing a blinded, sham-procedure trial and why they decided against it.)

Despite the fact that the BMC paper is just being published, the trial is over and its results have apparently been presented publicly: Medscape article about the conference presentation here (you need a free logon to access Medscape articles). Apparently the results were positive although the clinical significance of them is being debated. The Medscape article mentions that they found that the valves improved quality of life but (of course) no further info is given (qol measured how? actual magnitude of qol improvement? etc.). That said - if this pans out - given that we have very few interventions to actually make people with advanced COPD feel better - this may be an important new modality for these chronically ill and very symptomatic patients. I'm remaining agnostic about this for the time being, however.

(Images are bronchoscopic pics of open and closed valves from the BMC open-access article.)

Postgraduate Medical Journal has a discussion of 'palliative' patients not being able to go home, even when they want to. Some elements of it are specific to the UK/NHS system, but most aspects of the article would be recognizable to a world-wide audience. It talks a lot about the ethics of allowing or not allowing (facilitating or not facilitating) what we consider an unsafe discharge to home, balancing patient autonomy, 'choice,' etc. One of the interesting contextual points it makes is that palliative care/hospice rhetoric often promotes (i.e. sort of promises), 'choice,' and dying at home and makes these suggestions instead:

'Despite the benefits that follow from offering choice, there are times when patients have fewer choices than they have preferences. (Patients would prefer not have a terminal illness, but do not have any choice about this.) If professionals are not clear in their thinking as to this distinction then they may be left feeling uncomfortable when what are perceived to be choices (but are actually only preferences) about place of care are not achieved. The role of healthcare professionals is to facilitate those choices that do exist, and to help patients understand why other preferences are unachievable.'

BMJ has been full of little nuggets lately and here's one more about furthering the legal weight of advance directives in the UK. This has to do with some specifics of UK policy/practice, and what is described seems very reasonable:

'Advance directives or "living wills" to refuse treatments are already binding under common law, but the act sets up a statutory framework that aims to give doctors and patients greater certainty. Patients will not be able to demand any particular treatment or require a doctor to do anything unlawful. NHS guidance on ADRTs says it should be made clear to a patient that artificial nutrition and hydration are considered treatment, while basic care, such as giving food and water by normal means, is not.'

I particularly appreciate the bit about not being able to demand any particular treatment. This may vary considerably by state in the US, but in least my state, the way the living will & health care proxy forms are set-up, it can imply to patients that they can pre-specify what they want done (not just place limits on what they don't want done). And while this may not be legally binding, it can give confusing messages to patients, and occasionally causes a lot of headaches.

NEJM recently has a review on uremia that was really interesting. Much of it has to do with the pathophysiology of uremia (and dialysis modalities that are being developed/tested to try to improve the effectiveness of dialysis). It also talks about the 'residual syndrome' and the reality of advanced debility, frailty, and poor health-related quality of life that many dialysis patients have and how dialysis itself, while life-prolonging, does not necessarily restore function/health for many:

'The 5-year survival rates between 1995 and 1999 were under 35% for both hemodialysis and peritoneal dialysis. Patients treated with dialysis are hospitalized on average twice a year, and their quality of life is often low. Not all of the illness of a patient undergoing dialysis can be ascribed to uremia. Indeed, the evolution of dialysis has made the effects of uremia more difficult to distinguish, since the severity of classic uremic symptoms is attenuated. Instead, patients undergoing dialysis now have a new illness, which Depner aptly named the "residual syndrome." This illness comprises partially treated uremia; ill effects of dialysis, such as fluctuation in the extracellular fluid volume and exposure to bioincompatible materials; and residual inorganic ion disturbances, including acidemia and hyperphosphatemia. In many patients, the residual syndrome is complicated by the effects of advancing age and systemic diseases that were responsible for the loss of kidney function.'

The same issue also has a personal piece about codes & physician emotion (free full-text). I particularly struck by the author's mention of hiding emotion behind the word 'unfortunate':

'Often we kept those feelings to ourselves, rarely giving voice to them as we proceeded through far more challenging situations during our clerkships — a newly diagnosed lung cancer, a 2-year-old with an inoperable and therefore fatal brain tumor, a young man with quadriplegia from diving into shallow water. We discussed the medical management and the complications in detail and with intense care, but we could not give voice to the feelings these events evoked, often reducing them, in the formal case presentation, to the single word "unfortunate."'

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