Friday, September 18, 2009
Annals has a review of 'last resort' palliative sedation techniques (this makes two Tim Quill papers in a month in Annals). It begins with an apparently true story of a home hospice patient who was denied 'total sedation' despite refractory symptoms and requesting it (patient had to fire the hospice, and a previous palliative care consultant physician managed deep sedation for him over the phone: crazy).
The paper attempts 3 things: first, it tries to clarify the language used to describe sedating practices at life's end; second, it discusses ethical controversies about sedation; and third, it makes some practical suggestions that palliative sedation should be practiced by organizations only with explicit policies, procedures, and quality control.
The language proposed in the paper are three phrases:
- Ordinary sedation: attempts to relieve a symptom (e.g. anxiety) without trying to alter a patient's level of consciousness. (I don't know why this then would be called 'sedation' as opposed to, e.g., anxiolysis with a medication which can have a sedating side effect, but that's not really important here.)
- Proportionate Palliative Sedation (from the article): sedating medications (usually benzodiazepines) are progressively increased alongside other symptom-relieving measures, resulting in increasing levels of sedation during both waking and sleeping hours to help relieve suffering. It is usually initiated in response to otherwise intractable physical suffering in imminently dying patients, as in the case described, for example, or for agitated terminal delirium. The end point is relief of suffering that is acceptable to the patient by using the minimum amount of sedation needed to achieve this goal.
- Palliative Sedation to Unconsciousness: This is what has variously been known as 'terminal sedation,' 'continuous deep sedation,' etc. Deliberately, pharmacologically, inducing a state of unconsciousness in order to relieve otherwise refractory symptoms, and with a plan of maintaining such a state until the patient dies (usually while withholding life-sustaining treatments otherwise such as artificial hydration/nutrition). They mention that this has been proposed, controversially, for existential suffering.
One can appreciate that, in real life, what starts as PPS 'turns into' PSU in those rare occurances when you realize relief of suffering cannot be obtained without induction of unconsciousness, and that clinicians on the ground often don't spend too much time worrying about whether they are doing PPS or PSU. I also wonder that, with these definitions, and by describing PSU as a last resort practice, which it should be and I think by and large is used this way, one should argue that PSU should only be peformed after a trial of PPS, because how else can we be sure it is a last resort option? Which is another indication that trying to distinguish between these practices on the grounds of initial therapeutic goal (adequate sedation vs. coma) can't entirely account for real clinical practice - I think it's fuzzier. That said, there are times in which PSU is attempted from the get-go; for me it's when I conclude suffering is tremendous and death is very imminent (and I don't have hours or a couple days to tinker - or if I did it would be at the expense of ensuring a peaceful death) and you just go straight for deep sedation. Of course, I'd argue this is absolutely 'proportionate' when the alternative is a scenario when an imminently dying patient spends half their remaining hours suffering just so I can be 100% sure that I'm being 'proportionate.'
Which highlights the element of all this which I think they undersell in this paper: the question of imminence. It's actually barely mentioned, at least in frank terms. While they discuss ethical objections to PSU (as potentially death hastening, such as when artificial nutrition and hydration are withheld), such objections, to me, only have merit (which is not to say one has to agree with them) if one concludes that providing PSU is materially death-hastening (by weeks, months let's say). A declining, advanced cancer patient, bedbound, not taking much PO, who is developing altered mental status - this is someone who has days to maybe a couple weeks to live (generally speaking) - PSU without artificial nutritional support is unlikely to be death hastening, and if so by hours or a day or two. And if one is worried about hours or a day or two in dying cancer patients then we should all be debating about whether we should intubate and ventilate these patients to get them those precious days.
These questions have not been rigorously researched (there have been some preliminary attempts), and certainly would be difficult to study (e.g. prognoses of patients who have PSU performed, etc.). Along these lines the authors note that it's very difficult to tell in the palliative sedation literature what exact practice is being studied, due to the lack of agreed upon definitions of these practices. It's possible the authors don't believe imminence, per se, matters - it's less important than the refractory nature of the symptoms and lack of other options. Fair enough, but not foregrounding the importance of prognosis gives fuel to the fire that PSU is PAS-lite, or otherwise ethically suspicious. We all think in terms of risk-benefits; and the risk of a loss of two days vs 2 months, to me, are different.
Leaving my agenda aside here, the paper also gives important recommendations to all hospice and palliative care groups to establish sedation policies, procedures, checks, and quality control to both ensure the best possible care but to also mitigate potential for abuse or misinterpretation of these practices. I think one could also add we, as a community, should agree upon research definitions of these terms, to improve our ability to actually study sedation practices.
(Image is from an August Annals issue.)