The New York Times has an article on hope published today in their ongoing "Being a patient" series. It tries to describe the pitfalls and perils of both "false hopelessness" as well as "false hope." It's journalistic, showing "both sides of the story," and--inevitably--quotes Emily Dickinson. But it does capture pretty well what many of us confront daily.

Dr. Eric Cassell gives a good quote:
[Patients do not need] false hope that is personified in useless therapy with nontherapeutic effect.

(Typically, NY Times articles are only available--with free online registration--for about a week. Otherwise you need a pay NY Times Select subscription. If you're reading this in January, & really want this article, let me know.)

The December Journal of Medical Ethics has an opinion piece questioning the teaching of the "Four Principles" (beneficence, non-maleficence, autonomy, and justice) to medical students.  In fact, it generally savages the 4 principles all around (not so much for the ideas themselves but for the their promotion as bedrocks of ethical medical decision making).  The piece smacks somewhat of a medical ethics in-fight, but the author has some choice things to say.  I appreciated the article for a few reasons: 1) I whole-heartedly agree that the 4 Principles are just not very useful--when was the last time you consulted them to help you think about a difficult case? 2) "autonomy" is often misused by physicians as a way of avoiding making difficult decisions about medical care with their patients (cf. the Hastings Center Report, 3rd article, by R. Burt), & 3) for its contrarian rhetoric & use of the word "palaver."

Some highlights...
[The Four Principles] remain utterly fatuous. Let me take the two neologisms first. What does beneficence mean other than "be nice"? What does non-maleficence mean other than "don't be nasty" (however noble sounding the Hippocratic Oath)? Such heavy-sounding principles are hardly going to enlighten anybody, let alone solve ethical puzzles. After all, every time I give an injection I am harming the patient. Instead, there are perhaps two sets of genuine ethical questions that are needlessly obscured by the bureaucratic verbiage: (i) is this action really harmful, in what sense, according to what criteria, in whose judgment, is the response to the harm appropriate, etc, and (ii) is this harm justified by the quality and likelihood of the subsequent benefit? My point is: if these are the real questions, why not go straight to them, without all the palaver?

Some have claimed that the Four Principles could act as a structural framework for analysis or "a useful 'checklist' approach to bioethics for those new to the field".  I would say that anybody who is morally obtuse enough to need such a checklist would not be capable of interpersonal relationships of any complexity, and certainly should not be practising medicine.

Autonomy is more philosophically robust than the first two, but it is no philosophical achievement to conclude that "X should be done because it respects the patient's autonomy". When a competent patient declares what he wants or does not want, then of course this should be respected where possible: but that's not a high blown Principle of Medical Ethics, that is how we should treat anybody. Again, the real ethical questions are unnecessarily obscured: should the patient be given what he wants when there is a doubt about whether he understands his situation and the options available? Should the patient be given what he wants when it is judged medically futile? Too much emphasis on autonomy leads to a conception of health care as merely another service to be provided to customers on demand. In this I agree with Alastair Campbell, who prefers to speak of respect for persons rather than respect for autonomy: "Respect for persons entails dialogue, perhaps even confrontation, but only to ensure honesty in each party, in the face of death".

And on this note I wish Pallimed's readers Happy Holidays & Safe Travels.

     --Drew.

As the holidays come storming towards me, I haven't been posting as much, & I expect things from my end will be lax until after the new year. Thanks to Christian for picking up the slack. I can't emphasize how interesting the Hastings Center report is, and appreciate Dr. Sinclair's posts.

I wanted to briefly highlight two journal issues which have devoted a series of articles on end of life care:

First, Journal of Clinical Oncology has published 3 pieces on pediatric death & end of life care--one about end of life preferences of kids dying of cancer; one about patient and physician impressions about what constitutes quality terminal care; and the last a survey of bereaved parents regarding stress/coping/etc. What was striking about the first article (which involved interviews with 20 kids aged 10-20 years who were dying) was how similar their end of life preferences, decision making algorithms, etc. were to what I see as adults' preferences & algorithms. Top on the list was both how their disease and decisions affected family members as well as concerns about their symptoms/suffering.

The Journal of the American Osteopathic Association has published a supplement on "Holistic care for cancer pain" (Table of contents here; there's free full-text on all of these articles). There are articles on non-pharmacologic & complementary treatments of cancer pain, pharmacologic therapies, etc., as well as the American Osteopathic Association's statement on end of life care which is very reasonable.

I was greatly disappointed however by the article "Palliative care: optimizing quality of life." With a title like that, I thought it would be a nice, soft, promotional overview of the profession and patient-care model I know as 'palliative care.' Instead, we get an a section on "palliative chemotherapy" (perpetuating the confusion between non-curative but life-prolonging chemo & truly "palliative," symptom-reducing treatments...such as they are**), palliative radiotherapy, palliative surgery, and palliative interventional therapies (celiac plexus blocks and the like). All of this is swell & all of these interventions can be wonderful, but this is a very different conception of palliative care that I, & I suspect most of us, see daily--which involves help with end of life decision making, advanced care planning, grief/bereavement/spiritual support for patient and family, & a whole bunch of medical therapies for pain & symptom management. All of these, I hope, are part of "optimizing" quality of life.

I'll stop my tirade now. Maybe I'm just thrown by the title, which should instead be something like "Palliative care with the knife, needle, poison, & ray-gun."

**See here & here.

Dr. James Hallenbeck at the VA Palo Alto has made some great online resources available for Palliative Care. He has a blog through Growthhouse, an online Palliative Care Resource center. One of his blogs talks about Palliative Care Journal Club, and he has made a available through the VA Palliative Care website 49 topics with journal references to cover most of the common Palliative Care topics. For those looking at a year-long curriculum resource or just something to read throughout the year, this is already well-developed and well-researched. I am thinking about using it in our fellowship with proper credit to Dr. Hallenbeck and the VA, of course. If you find it useful, make sure to drop him a line and let him know.

The free article from the Journal of Neurology, Neurosurgery and Psychiatry on prognosis of ICH-type strokes provides a good tool for use in the ICU. The development and validation of the Essen ICH Score can be useful to neurologists and palliative medicine physicians dealing with this devastating illness.

Using a functional index of daily activities called the Barthel Index (0-100, worst to best) to assess independence and functional recovery, the study followed 340 patients from stroke onset to 100 days post stroke. The Essen ICH Score is derived from 3 factors: Age, NIH-Stroke Scale (NIH-SS), and NIH-SS Level of Consciousness. The maximum Essen ICH Score is 10 with >7 indicating likely death, and <3>95 on the Barthel Index). They compared the sensitivity, specificity, Positive and Negative Predictive Value (PPV and NPV) for the Essen ICH Score, physician's prediction and the old standard prognosis scales the ICH Score and the Modified ICH score.

The major improvement with the Essen ICH Score is that it helps to predict functional recovery which the ICH score and modified ICH score never did. The PPV and NPV of the Essen ICH score to predict death is 88.7% and 81.0% and to predict functional recovery is 69.8% and 86.7%. Of note these scores are very similar to the physician's predictions. In fact, the prognosis of the physicians had a better PPV for death (93.3%) and for complete recovery (79.2%). An interesting last line of the article:

In contrast, the even higher positive predictive value of the physicians´ prediction of death may hint at a self-fulfilling prophecy.

The Hastings Center has released a report on the progress made in EOL care in the past decade. It was sponsored by RWJF and published in early November. I just got around to reading most of it. Hope you find some of the topics below interesting. (Note: you do have to register and log on to get the report, but it is free.)

Here are the articles and authors:

• Preface-Bruce Jennings
• Death: The Distinguished Thing - Daniel Callahan
• The End of Autonomy - Robert A. Burt
• Living Long in Fragile Health: The New Demographics Shape End of Life Care -• Joanne Lynn
• Conflict and Consensus at the End of Life -• Nancy Neveloff Dubler
• Hope for the Future: Achieving the Original Intent of Advance Directives -Susan E. Hickman, Bernard J. Hammes, Alvin H. Moss, and Susan W. Tolle
• Recognizing Death while Affirming Life: Can End of Life Reform Uphold a Disabled Person's Interest in Continued Life? - Adrienne Asch
• Making Room for Dying: End of Life Care in Nursing Homes - Sandra H. Johnson
• The Past and Future of Palliative Care - Kathleen M. Foley
• The Role of Litigation in End of Life Care: A Reappraisal - Alan Meisel
• The Quest to Reform End of Life Care: Rethinking Assumptions and Setting New Directions - Thomas H. Murray and Bruce Jennings

The current Journal of Pain and Symptom Management has the usual assortment of interesting articles.  What struck me most, however, was a very modest article looking at changes in symptoms over time in patients undergoing radiotherapy.  This was a large, single-center study in which ~1100 patients' symptoms were prospectively measured for 5 weeks while undergoing radiotherapy (they were able to gather a full 5 weeks' worth of data on ~400 people).  This was an unselected group of people undergoing a variety of radiation therapies for a variety of different cancers.  Much data is presented in the article, too much to discuss in detail here, but their findings were pretty consistent and depressing:  troubling symptoms are common before radiotherapy and overall worsen throughout the 5 weeks.  Fatigue, drowsiness, &--of course--skin problems worsened the most.  Pain didn't decrease at all in the cohort, although they couldn't select out those receiving radiotherapy for painful bony mets.  Not surpringly, those receiving head and neck radiation seemed to fare the worse. 

These findings are congruent with another piece published in JPSM in August, surveying symptoms in a radiation oncology clinic.  All of this magnifies the need for improved palliative care in the radiation oncology clinic, and improved symptom/palliative education & support for our rad onc colleagues.

(Somewhat along the same line, in this issue there's also an article on the symptom burden of those with HIV receiving palliative care.)

Is it because the Holiday eating season is upon us?  Or because this is how long it takes medical journals to solicit and publish papers in response to a national trauma?  Because there's another article about artificial nutrition and hydration that's just been released, this time in the New England Journal of Medicine .  This one is much more mundane than the last one --really it's just a recap of the basic medical, ethical, & legal framework for why stopping ANH can be appropriate.  Their commentary, however, promoted several agenda items that I enjoyed seeing in the pages of The Journal--including improving physician reimbursement for family conferences & removing laws that limit the ability of surrogates to make decisions about forgoing ANH (they rightly argue that ANH should not be treated differently by the law than other medical decisions).  Also appreciated was this:

[D]ecision making about ANH in nursing homes should be shielded from financial and regulatory pressures. Although the loss of the ability to eat is an expected part of dementia, one third of cognitively impaired nursing-home residents have a feeding tube.   Nursing homes should not be reimbursed at a higher rate for residents who are receiving ANH than for those not receiving ANH, since providing ANH costs less than feeding by hand.  In addition, staff and surveyors should be informed that nursing homes should not be cited when a patient loses weight after a decision to forgo ANH.  Finally, publicly reported data on weight loss, which are available on the Centers for Medicare and Medicaid Services Web site, should exclude data for residents whose weight loss is the result of a choice to forgo ANH.

The European J of Pain has an intriguing article looking at the side effects of rapid, inpatient opioid titration, from Sebastiano Mercadante's group in Palermo. If you read the abstract there is some implication that the study helps disentangle side effects from cancer vs. those from opioid titration, but this is unfortunately not true. (Some chart reviewer, presumably in his or her own idiosyncratic way, decided which side effects were from opioids and which weren't, and--perhaps an acknowledgment of how unreliable this is--these results were only mentioned qualitatively in the discussion.) Nevertheless it's an interesting study, one of those "let's look quantitatively at something we do everyday," with some findings worthy of comment.
The authors prospectively gathered symptom data from 33 patients who were admitted to a palliative care unity for acute symptom management. These patients all had cancer, but were not in the "terminal" phase (all had Karnofsky's >50 & a life expectancy >1mo). All had rapid opioid escalations (50% a day during the escalation phase) and, on average, achieved a stable opioid dose at 40 hours. They measured a bunch of symptoms at the time of admission, at the time the patient achieved a stable opioid dose, and then 10 and 20 days later. The symptoms that clearly worsed during this were drowsiness and constipation (drowsiness did abate by 20 days but remained a little higher than baseline). Dry mouth was a touch worse at the time patients achieved stability but this abated by day 10. Weakness, confusion, appetite, and mood didn't change much at all.
Most interestingly, however, is that nausea/vomiting didn't change at all during the study. The patients received anti-emetics at the treating doc's discretion (but 9 out of 33 patients received them), so this is heartening news that it appears possible to rapidly uptitrate opioids without this dread side effect.

This article also introduced me to a new word for enema: clyster.