Tuesday, December 29, 2009
This Sunday's New York Times had a front page/below the fold article on 'palliative sedation' (which as of last night was still the #1 most emailed article according to their website). It is a long, confusing article, & I'm still trying to figure out what I think of it. Like most newspaper articles about things like this it gets some things it gets spot on, while others I found deeply troubling.
The article tells the stories of several dying patients and their families, as well as interviews with palliative care physicians and other clinicians. The overarching theme of the article seems to be that 'PS' is controversial and ethically suspect - many doctors wouldn't talk about it directly with the journalist, 'slow euthanasia' charges are brought up, etc. The article also seems to recapitulate the generalized confusion out there as to what palliative sedation/terminal sedation is - and while it starts out as seeming to be about the practice of 'continuous/deep sedation' it confusingly then gives at least one patient story which is not about CDS (it's instead about a dying patient who became somnolent in her final days who also was receiving sedating comfort meds but did not receive CDS).
What it does well, and serves as a prime example of, is the anguish and distress that alterations in consciousness in dying patients cause our patients and their families. The loss of communication and personhood that accompanies the loss of consciousness, and the reality that many patients and families frequently attribute it to comfort meds and not the dying process, is repeatedly illustrated in the article. To be clear, absolutely the meds we use to treat symptoms in the dying (opioids, benzodiazepines, etc.) contribute to alterations in consciousness and I don't mean to suggest otherwise: what the article illustrates however is the pervasive unease families have about this, and the failure of clinicians to adequately allay these concerns. Not to make families 'happy' about the devil's bargain of 'more alert/more suffering' vs. 'less alert/less suffering' that occurs frequently in the imminently dying - it sucks and there's no getting around that - but the sense from the article is that many of these family members have persistent and unaddressed emotional and informational troubles about this, and that's a problem.
Aspects which troubled me:
- There is no mention of the (yes incredibly preliminary and by no means rigorous) investigations into PS practices which do not suggest it frequently hastens death (see for instance here: I by no means think this is any sort of definitive evidence, but it's an indication that people are beginning to try to answer these questions and thus far are not coming up with much to suggest current sedating practices hasten death).
- The article associates PS with rationing care at the end of life (ie clinicians being urged to hasten things along with PS to save money etc.). It does this by essentially saying 'boy PS could be used this way' then notes that no one thinks it is - but this is a sort of journalistic guilt by association (bringing it up then shooting it down) even if there is no one anywhere who thinks this is a significant problem.
- Every time it mentions sodium thiopental it notes it is also used as part of a lethal injection cocktail. Nice. So is potassium chloride, one of the most widely prescribed and used meds out there, but who's counting.
- One of the photos is of a patient who is described as resisting a DNR order for sometime, who at some point prior to her death agrees to it. They have a photo of her signing her DNR order - in the photo her doctor is actually holding the patient's hand with the pen in it (as if to steady it, etc.) - but given the overall tone of the article the (usually slumbering) paranoid part of me wondered if that image was deliberately chosen to suggest the patient was pressured into signing it against her better judgment, etc.
- There is no presentation of any patients for whom sedation (whether CDS or not) is seen as a good, welcomed thing (by either the patient or family). For every patient discussed in the article their sedation was presented as emotionally fraught, troubling to either the patient, or the family, or even the clinicians. As I mention above, this is absolutely fair, but in my experience it's just as common for family members to greet the mention of deliberate sedation with relief and gratitude: 'thank you for not letting my love one die suffering like they have been,' etc. I scanned some of the comments online and many of them spoke positively about sedation (either 'I'm glad the doctors did it so my loved one didn't die in pain' or 'When I'm dying I hope someone is willing to make me comfortable even if it means this') - it's too bad the article didn't present this perspective.
As I mentioned before, I have very mixed feelings about the article, and would appreciate others' comments and thoughts.