Pediatric palliative care; 'Continuous deep sedation'

1)
Lancet has a fantastic article about pediatric palliative care. It's both a general overview of the field as well as a lively discussion of the Big Issues in pediatric palliative care (pretty much all of which will be familiar to practitioners of adult palliative care). It has case discussions involving concurrent palliative & curative therapy, palliative care for terminal illnesses which go on for years, cultural issues, suffering, hope, international issues, etc. You can tell I really liked it. Also, some sanity about 'denial,' probably one of the most over-used labels we (medical people, not necessarily palliative care people) apply to our sick patients:

Adults aware of their impending death might maintain hope by shifting from a hope for cure to hope for what they define as a good death (eg, as pain free and comfortable as possible) and with a focus on leaving a legacy. How to support hope for children with life-threatening illness is less clear. An additional challenge is the struggle for parents and other loved ones to maintain hope. What remains unexamined is the role of “healthy denial” in maintaining hope for cure despite a very poor prognosis. It is possible that for some children and parents “unrealistic hope” in the face of overwhelming disease is a functional coping mechanism that does not necessarily signify pathological denial. At times, people might hold beliefs that although seemingly discordant with each other (eg, the knowledge that one is about to die at the same time as maintaining hope for a last-minute reprieve from death) could instead represent healthy coping.

The same issue also has a review of cirrhosis with some good general info on general prognosis (although nothing much beyond this Fast Fact), prognosis after transplantation, and up-&-coming therapies (?maybe) aimed at directly slowing/reversing liver fibrosis. Interesting stuff, but nothing about supportive care.

2)
Archives of Internal Medicine has a couple.

First is an attempt of sorts to validate an anticholinergic risk scale. The ARS was developed to try to quantify how likely a certain drug is to cause anticholinergic side effects (falls, dizziness, confusion, dry mouth, constipation, dry eyes, etc.). The scale gives a drug a 0-3 (none to severe) score for likelihood of causing anticholinergic side effects and then a patient is given a risk score which is the sum of their individual drugs risk sub-scores (2+3+3 = 8 - this would be for a patient on one moderate risk and 2 severe risk anticholinergic drugs). This study attempts to validate the ARS (which was developed relatively empirically based on pharmacologic know-how) in a geriatric population (geriatric clinic patients) by looking at risk scores with actual symptoms and comparing geriatric patients with general primary care clinic patients (on the assumption that older patients are more likely to suffer anticholinergic toxicities). Essentially they found that the AR scale & score were decently predictive of toxicities, particularly in the elderly, and they conclude that the ARS is a reasonable way of identifying high-risk patients. (There is a table with the risk scale as part of the article).

The other paper is about 'delicate' issues surrounding 'continuous deep sedation' (also variably known as terminal or palliative sedation) in the Netherlands. It is based on a survey (36% response rate) of Dutch physicians, and much of the context of the study involves the fact that these physicians have euthanasia as an option for them as well as terminal sedation. I'll only comment on a couple findings. First is that these physicians overwhelmingly differentiated between TS and euthanasia, apparently largely due to intentionality - their intention with providing deep sedation was to alleviate symptoms as opposed to bringing about death in euthanasia. The other point is that the use of TS exclusively for non-physical symptoms (i.e. existential suffering) was relatively rare (~8% overall - rates are much higher than this for euthanasia). My overall gloss on this (and this is not the first bit of research out of the Netherlands to suggest this) is that - even in a setting where both practices are available - TS and euthanasia are conceived of differently by practitioners, and used differently for different situations/patients.

3)
Coincidentally, BMJ has a paper (again a survey) describing the epidemiology of the use of CDS in the Netherlands: how often, what reasons, use of artificial fluids/food, etc. Most physicians (again, this is all based on physician retrospective reporting) felt that it either didn't shorten life or did so on the order of less than a week. The one interesting bit here, and perhaps one that contradicts my earlier pontificating, is that rates of euthanasia are declining in the Netherlands whereas the percentage of people who die while receiving CDS is increasing which makes one wonder if one is being substituted for another...?

The accompanying editorial's subtitle is also worth mentioning: "Imprecise taxonomy makes interpreting trends difficult" and discusses the ongoing struggle involving language (TS vs PS vs CDS, etc.).

4)
Mayo Clinic Proceedings has two reviews. One is a discussion of informed consent - quite legalistic but a good basic review of the topic, its history, etc. The last section discusses autonomy and how patients actually want decisions made and I enjoyed this line: "Responsibility for medical care has landed on the shoulders of patients with a resounding thud."

The second is a review of small cell lung cancer. Picking up our on & off again habit of noting whether supportive care is mentioned in review articles of nasty, nearly uniformly terminal illnesses I'll point out that, in fact, there was no mention of anything like that.

5)
JCO has a really compelling reflective piece on death & blame. It starts off about patients/families blaming someone (oncologists, etc.) for the fact that treatment often doesn't work and then goes into a discussion about the place of death in our culture - is death fundamentally a wrong (in a deep moral and spiritual sense) or not? The problem is of course one can deeply believe that death is not wrong but that doesn't mean that 1) your patients agree, and 2) it doesn't deeply suck (hurts on the inside & the outside so to speak) anyway (to quote Christian quoting me - see the last post).

6)
Age & Aging has a study about a prognostic index for determining 4-year mortality for the elderly. It's based on prospectively gathered data on ~1000 patients from a single region in Italy and uses relatively easily obtainable data (could be obtained from a single office visit). Patients in the highest risk group had a 78% 4-year mortality - although it needs to be noted that only a very few patients fit into this group and so it becomes very difficult to interpret its validity. Indices like this are helpful in two ways: 1) as a research tool (risk stratifying subjects, etc.), and 2) to identify patients with more urgent indications for advance care planning, etc. What's unclear is if they offer anything further (clinically) than reinforcing the maxim that 'sick people are sick.' Thanks to Dr. Bob Arnold for alerting us to this.

7)
Finally, and don't call me crazy for noting this, JAMA has a primer about interpreting large genomic studies. It's likely that at least my generation will be faced with actually clinically useful genomic studies (about predicting efficacy/toxicities of opioids and other meds at the very least) and knowing what to make of these studies will be an important skill.