Tuesday, July 31, 2007
3 disjointed topics this Tuesday:
Two from the latest Journal of Clinical Oncology.
First is one looking at cancer survival trends. It is based on data from the SEER database and presents 5 and 10 year survival estimates for multiple types of cancer. The authors use what is described as a novel and accurate model, "modeled period analysis," to make the survival estimates. Needless to say there is complicated statistical modeling going on here which I don't understand; the authors' claim is that this method provides more accurate information about survival because it is more reflective of recent trends (in this case up to 2003) - if anyone can explain why MPA is good in human-readable language please leave a comment. Why I'm bringing this up though is because it provides the most recent data in long-term cancer mortality for US patients, and presents data stratified by type and stage of cancer, as well as age and sex, giving us a good prognostic 'gestalt' for our patients.
The general findings regarding trends in cancer survival is that for many cancers long term survival has incrementally improved since 1988 (up a few percent). Survival for lung and pancreatic cancers however remains dismal (16% & 7% respectively at 5 years).
The other article is one on survival prediction for patients receiving radiation therapy. This was a prospective German study of 216 people with incurable cancer receiving palliative radiotherapy. The researchers gathered various clinicians' (including their institution's tumor board as a whole) survival predictions and measured a bunch of other variables (performance status, certain symptoms, opioid use, etc.). They found that clinicians' survival estimates weren't great. They asked the clinicians to place people in 3 categories (<1>6 months to live) and they were accurate a little more than half the time. When inaccurate they tended to overestimate survival and were worst at predicting those who would die in a month. I personally think these categories are a little unfair and one wonders if their results would have been different if they were <3mo,>6 months. Nevertheless all of this is in keeping with previous findings (docs aren't great predictors, tend to overestimate survival). Also in keeping with previous findings was that certain objective findings were independently associated with worse survival in their multivariate analysis: brain mets, dyspnea, poor performance status, high LDH, high WBC count. More interesting is that they also found that the use of opioids was an independent predictor of mortality in multivariate analysis (& had about the same magnitude of risk as brain mets). I can't recall opioid use (or pain itself) panning out as an independent risk factor in other similar studies looking at prognosis in advanced cancer. Christian, as our resident prognosis go-to guy, any thoughts? This is all likely a statistical dead-end of course but assuming it's not and assuming opioids weren't the cause of death per se one wonders what opioid use is a marker of here - identification by a doc that they are 'end stage' and strong analgesic use is appropriate? Severe pain itself predictive of mortality?
BMJ has a piece by Chochinov on dignity conserving care for all patients. It is a general piece, directed at a broad range of clinicians, and (perhaps mimicking BMJ's ongoing "The A,B,C's of..." series) presents the A,B,C,D's (attitude, behaviors, compassion, dialogue) of dignity in routine patient care. I never know whether I should despair or rejoice when I see pieces like this. Rejoice because they are being published in widely read and prestigious journals. Despair because I am reminded that we (physicians) do in fact really need to be reminded of Chochinov's very basic assumptions and recommendations (basic but of course accurate/important): patients want/need to be cared for as whole people, we should talk to our patients about their lives and strive to understand how their illnesses affect them.
"Treating a patient's severe arthritis and not knowing their core identity as a musician; providing care to a woman with metastatic breast cancer and not knowing she is the sole carer for two young children; attempting to support a dying patient and not knowing he or she is devoutly religious—each of these scenarios is equivalent to attempting to operate in the dark."
To amplify his point (...without this we'd be operating in the dark...): there is nothing special or squishy or superfluous about this, it's just good medical care.
And finally, Pain Medicine presents a randomized, placebo controlled (sham therapy) trial of therapeutic touch for reducing pain and anxiety during stereotactic breast biopsies. They describe sham TT as:
"Sham TT employed the approach of Quinn—practitioners having no conscious intent to help and counting backward by "serial 7s" silently during "treatment"—was administered by providers neither trained nor experienced in actual TT delivery but who completed two 3-hour training sessions instructing them only on hand movements simulating TT. In this way, variables such as support from another person not involved with the procedure and patient distraction during SCB can be controlled for."
No differences were found between the real TT group and the sham group in any of the outcomes, suggesting any benefits from TT are from caregiver attention or other similar mechanism. There has been ongoing concern about publication bias in CAM studies (negative studies not being published) so I'm glad to see decent, controlled trials like this getting published. On the other hand, this isn't the first controlled trial out there showing TT to not work (or its fundamental assumptions to be flawed), and one could argue why bother doing more studies?
Tuesday, July 31, 2007 by Drew Rosielle MD ·
Thursday, July 26, 2007
The New England Journal of Medicine is on a roll with relevant hospice & palliative medicine content lately. This week they have 4 key hospice related pieces, an audio piece and an article by one of the top prognostic researchers.
Some of you may have stumbled upon Oscar the death-predicting cat via a NPR radio lead-in on Morning Edition, or in various newspapers. The human (animal?) interest story is about an anthropomorphized cat who appears to be able to prognosticate death within a few hours at a nursing facitily (Steere House) in Rhode Island. Can animals predict death? Like animals predict weather? or earthquakes? Should we fund more studies into Oscar and his animal breatheren? Or are we reading too much into his actions? There are plenty of biases that could be brought up here: recall bias, selection bias, groupthink, information bias, attentional bias, and so on and so on. But despite all my skeptical skepticism, the point of the story is that Oscar's efforts at prognostication and the compassionate presence he provides is appreciated by staff and families. Which is the real lesson here is that prognostication and compassionate presence can be important human efforts as well. Just because the cat does it, does not mean we should neglect those duties ourselves. (I do have problems with the anthropomorphizing nature of all this, I mean c'mon it is a cat. Now if this was a dog, I could understand it.)
Dr. Gazelle has a nice piece that should be part of any hospice 101 talk given to medical students, residents, and attendings when being introduced to hospice. Probably to simple for this focused audience but a good teaching file article. And a free pdf too! I do like that the table with eligibility guidelines has a asterisk noting they are not hard-and-fast requirements, just guidelines.
Also take a quick listen to Timothy Quill's audio interview. Nothing groundbreaking but also good to help anyone make a hospice 101 talk.
Dr. Annas, NEJM's resident lawyer-doctor does an excellent job again with a good analysis of use of investigational medications for potentially fatal diseases before adequate research has been done. The paper covers the Abigail Alliance court efforts to allow terminally ill patients the constitutional right of access to investigational medications. Fascinating reading even if you are not fluent in legalese.
And the final piece in NEJM, is a pretty good article on why hospice maybe underutilized, with some minor discussion of open access and the barriers to implementation. There is one really great table which should be required coffee shop chat material for an oncologist and palliativist to discuss one brisk evening. Here is the table, click on it to get to the article which is also available in a free pdf.
One minor concern I have is that the well-written piece was not written by palliative medicine fellows. Dr. Wright and Dr. Katz are a hematology-oncology fellow and a infectious disease fellow. Now I am very glad these two fields want to discuss hospice & palliative medicine, but hopefully some of our field's fellows will start stepping up to the plate to write more articles like these, especially now that we are an official specialty. So if there are any journal editors out there wanting pieces on hospice and palliative medicine topics let me know, and I will round you up some palliative medicine fellows.
A quick video game-palliative medicine connection:
A new video game called Sabotage is debuting an in-game do-over mechanism called 'the morphine effect':
The game's morphine mechanic is particularly interesting, seemingly taking inspiration from Unbisoft Montreal's excellent Prince of Persia: The Sands of Time. If you die and happen to have morphine at your disposal, you can inject some and essentially give the situation another shot. Time freezes and the environment is rendered in a ghostly white, washed-out style, at which point you can reposition Summer in a more advantageous position--for example, right behind an enemy--and return to real time. What's that have to do with morphine? The idea is that Summer is lying in a hospital bed, telling her story--that is, the game itself--and a strong injection of morphine has caused her to distort the facts in her own head, after which she recants and tells it again.
Thursday, July 26, 2007 by Christian Sinclair ·
Wednesday, July 25, 2007
Several things in brief...
Pain Physician has a case based review on ketamine as an adjuvant for pain (free full-text available). Reviews the pharmacology and some of the data and provides very practical suggestions for its use. Good one for the teaching file.
Supportive Care in Cancer has an interesting case series on using very high dose corticosteroids for palliation of dyspnea from malignant upper airway obstruction (in otherwise dying patients). The authors' argument is that this can be effective but very high doses need to be used (on the order of 40mg of IV dexamethasone daily).
Some closure on the Hurricana Katrina physician murder charges: Dr. Anna Pou has been cleared of criminal charges after the grand jury failed to find evidence of a crime. AMA press-release here. The nurses' charges were dropped a couple of months ago. Interestingly the local New Orleans DA agreed with the decision to drop the charges while the state Attorney General lamented the decision. She still faces civil suits from family members of the patients she tried to keep comfortable as they died in the 100 degree horror post-Katrina. We have posted on this case several times before.
British Journal of Psychiatry has a randomized controlled trial of an intervention to reduce emotional distress in family caregivers of palliative care patients. The intervention was given to ~270 family caregivers of cancer patients receiving community-based palliative care services; the caregivers included in the trial were pre-screened to have 'distress' based on a survey. Subjects were randomized to receive usual care or weekly contact with a trained 'adviser' who usually met with the caregiver one-on-one to discuss their own needs (emotional and otherwise). The advisers were trained to give support/advice. This went on for 6 weeks.
Results: the intervention didn't do anything. Both groups improved equally. The authors' interpretation of their findings:
"There are several possible reasons for our negative result. First, the intervention might have been too brief. Qualitative data collected after the death of the patient suggested that carers experienced some subjective benefit from the advisor visits, but also a sense that the intervention was too brief. Second, informal carers of patients with cancer might already have been receiving considerable input from specialist palliative care services and the care advisor’s extra help might have had little additional advantage; for example, our intervention might have had greater impact in cases of chronic cardiac failure where routine support for patients and carers is less well developed. Third, caring for a dying relative is extremely stressful and no amount of support is going to make it much better. Fourth, our intervention might simply have been wrongly planned and thus unhelpful; however, our qualitative results do not support this possibility. Fifth, our outcome measures might have been insensitive to change or there was simply too much variance in the trial to allow detection of important change. Finally, given that nurses in the ‘treatment as usual’ group were aware of the nature of the trial and the intervention under evaluation, they might have tried harder to provide carer support. Given what we know about the workloads for nurses in these teams, we believe the last possibility is unlikely."
I was rather charmed by the succinct and frank nature of this paragraph. The one thing I'd add to this, also, is that it's telling that both groups improved similarly - this could suggest that there is a 'regression to the mean' phenomenon going on here. Only people who were particularly emotionally distressed at the time of their family member's palliative care enrollment were studied and maybe these people get better with time anyway - these may not be the people that interventions like this are helpful for. Anyway, there aren't too many controlled trials of these sorts of interventions, the field is still very young, and so any trial, negative or not, is notable & I'm glad the authors and BJP published it.
Seminars in Dialysis has an overview (it's somewhere between an editorial and a review) on palliative care & dialysis & dialysis abatement - more or less urging for a more thorough integration of palliative care principles/priorities into the care of the dialysis patient. Of interest, the author cites some research suggesting that older patients (>80 years old) with worsening renal function and poor functional status don't actually live longer if dialysis is initiated. The research seems preliminary (a couple of institutional studies) - here & this one not yet published so there's no link:
Pallimed reader Tammy McKluskey introduced me to a swell internet resource: palliative care case discussions from the Institute to Enhance Palliative Care at the U of Pittsburgh. They are brief case discussions followed by topic reviews - good educational resources. Thanks Tammy.
Wednesday, July 25, 2007 by Drew Rosielle MD ·
Monday, July 23, 2007
Newsweek: Back from the Dead
The cover of Newsweek has a man floating in a pool, with the caption "This Man Was Dead. He Isn't Anymore. How Science Is Bringing More Heart Attack Victims Back To Life." It is curious that the man is in a pose reminiscent of a cross, but alas this is not primarily a theological or graphic design blog so I will leave that for someone else to discuss.
The focus of the news article is induced therapeutic hypothermia after cardiac arrest, which has shown promise in animal and human testing to improved recoveries from cardiac arrest and possibly shock and stroke victims (some primary medical articles: here, here and here). Given the focus on recovery, the article does a fair job covering it, but of course with any new whiz bang technology it is important to look at when it may not be appropriate. To this end I wished they would have done some good public health work and included a sidebar/box on DNR orders, and trying to figure out when CPR might not be effective. Obviously this should ultimately happen on an individual basis between a doctor and patient, but a little public education would be great.
Other articles in the series cover near-death experiences and cardio-cerebral resuscitation.
The author did explore a fascinating concept is becoming more complicated as we learn more about the human body. When does someone actually die? They brought forth the idea that death is a process, and not a singular instant event. Death can happen on many levels from cellular to organ to whole body to social. Which is the great debate that comes up in...
Organ Donation after Cardiac Death
NEJM has a great editorial on DCD or donation after cardiac death (free pdf). My colleague Karin Porter-Williamson gave a great grand rounds on DCD this year. I have not had the opportunity to work with a case of DCD, since I work mostly in an inpatient hospice, and a hospital that has not had much experience with DCD. If you are on an ethics committee, or need a good case for morning rounds that features many ethical dilemmas, pick up this editorial. The editorial is also accompanied by a very interesting back and forth between an ethicist and a transplant surgeon. I highly suggest listening. I think this is a great added feature by NEJM, and hope to see more of these reader friendly gems in the future.
A couple of brief notes:
Thanks to NHS Blog Doctor for noting Pallimed in his Brit Meds Best of Blogs. For a different look at the UK's NHS system (As seen in Sicko!), give his blog a look.
A good bioethics article recently posted at Reuters highlights that "When to Let Go" is one of medicine's toughest dilemma. I would tend to agree with that, but also add it is one of society's toughest dilemmas as well.
Let's end with some Palliative Care trivia for Monday. Why? Because trivia is fun.
Can any American Pallimed Reader tell me what this phrase means (without aid of the internet)?
"Not for 222"
If you know the answer post it in the comments.
(Image courtesy of Flickr.com user Mimmi)
Monday, July 23, 2007 by Christian Sinclair ·
Friday, July 20, 2007
The most recent Journal of the American Geriatrics Society has a few articles I wanted to mention.
First is one on changing treatment preferences over time in older adults with life-limiting illnesses. It looked at ~180 community dwelling, cognitively intact, older adults with chronic illnesses (CHF, COPD, cancer) and at least one dependency in IADL's. They were interviewed at least every 4 months for up to 3 years. The subjects were asked questions along the lines of the following and then given different survival/recovery scenario/statistics:
"Think again about if you were suddenly to get sick with an illness that would require you to be in the hospital for a few days to a week. It would either be that your (CHF, COPD, cancer) worsened or you got sick with a different illness. In the hospital you would need to have minor tests, such as x-rays and blood draws, and therapies such as intravenous antibiotics and oxygen. However, this time, imagine that, at the end of the treatment, you would be in a state where you would be bedbound. You would not be able to get up out of bed to the bathroom by yourself, and you would need help with all of your daily activities. Without the treatment, you would not survive. Would you want the treatment?"
They found that (depending on the scenario) 35-50% of subjects, over time, reported inconsistent treatment preferences (their answers changed). They controlled for demographics, self-rated health status and quality of life, etc. and none of these predicted 'inconsistent' responses other than cancer subjects being generally more consistent than non-cancer subjects. The one thing that was predictable was that people who initially endorsed a desire for life-prolonging treatment in the most extreme circumstances (99% chance of death or permanent cognitive disability for example) were the most consistent - they didn't tend to change their minds. While not entirely clear to me after reading the article the authors imply there wasn't a consistent direction of the inconsistencies either (for example, across the cohort people didn't tend to change their mind toward wanting more 'aggressive' treatment as time went on).
As a practical matter this doesn't mean much other than a reminder to never stop talking with our patients about goals & the future - it's an ongoing process and not a static 'decision.' What is interesting here is that their findings suggest that the flux in decision making doesn't seem to be related in change in health status. Why else it would be happening I'm not sure and this finding could just be a limitation of the study design as opposed to anything profound. I'm intrigued by these patients who consistently said they'd want everything even with a 1% chance of recovery - seems like a population worthy of further study.
The other two I'll only mention in passing. One is a randomized trial of a Kaiser in-home palliative care program (it reduced costs, emergency room visits, hospitalizations). The other is about using an electronic medical record to improve advance directive and code status documentation in nursing homes.
BMJ has a metaanalysis of therapies for painful diabetic neuropathy. It looked at controlled trials of agents for PDN and used a 50% reduction in pain as its primary outcome (& calculated odds ratios for this outcome compared to placebo). Using the magnitude of calculated OR's they conclude:
"Our systematic review shows that tricyclic antidepressants, traditional anticonvulsants, and opioids have better efficacy than newer generation anticonvulsants, a selective serotonin reuptake inhibitor, and a serotonin noradrenaline reuptake inhibitor for relieving the pain of diabetic neuropathy."
They then propose a treatment algorithm for PDN based on their findings which places opioids as the last line treatment (behind the apparently less efficacious newer generation anticonvulsants and duloxetine). And they do this without comment. While I don't necessarily disagree with them (due to, among other things, opioid side effects - I'd try duloxetine first too) I found it notable that they down-graded opioids against their own findings without even bothering to discuss it, because, of course opioids are our last-line therapy....
This is a little off topic but I thought it might be of interest to some of Pallimed's readers: JAMA has a fascinating review on emotional distress causing cardiac arrhythmias.
Friday, July 20, 2007 by Drew Rosielle MD ·
Tuesday, July 17, 2007
Lancet Oncology has a couple of articles to note:
First is a randomized controlled trial of sertraline in advanced cancer patients suggesting it's not good for what ails you. This was a randomized, placebo controlled trial of 189 patients with advanced cancer who weren't feeling great (had some symptoms of depression, fatigue, anxiety, etc.) but who weren't felt to be actually depressed. What was meant by that last phrase - it's a little tricky - the patients had to score 4/10 on scales of self reported depression, anxiety, or fatigue - but who didn't have 'major depression' by the assessment of the 'responsible' clinician. That is, the patients weren't formally assessed for major depression, meaning that probably some of them indeed had major depression given how depression is notoriously under-diagnosed in cancer patients (on the other hand this does replicate 'real life' insofar as these weren't patients the treating clinician would have likely treated anyway). Patients were given 50mg of sertraline or placebo and primary analyses were at 4 & 8 weeks (although it seems patients were followed longer). Numerous assessment scales were employed.
Most patients were over 60 and had ECOG scores of 1. Sertraline did not come out looking good: basically no benefit on any of the many measures they took of depressive symptoms, fatigue, quality of life, etc.; it was discontinued earlier and more often than placebo due to adverse effects; and the study was actually stopped early because it looked like the sertraline patients had higher mortality than placebo (this wasn't significant in the final analysis however and was probably a statistical event and not a clinical one).
Prior to seeing this study I hadn't been aware people had been suggesting SSRI's for advanced cancer patients without a clear indication for them as a "quality of life booster" or a preventive measure against future depression and this study will likely squelch further investigation of this. I wonder though if further investigation is needed and that's to see if sertraline is effective for at all 'true' major depression in advanced cancer patients particularly given than some of these patients certainly had major depression and pretty much all of them had depressive symptoms. This, I think, is the true implication of this study. I would need to do a literature review here, and maybe a reader could help out, but my impression was that there are a handful of quality studies looking at antidepressants in cancer that were generally positive. What I'm unsure of is how many of these studies were of advanced cancer patients as that may make a world of difference.
I'll also briefly mention a trial of radium-223 in hormone-refractory prostate cancer with painful bone mets. Radium-223 is beginning to be studied in humans as a novel radionucleotide (similar to strontium or samarium) and this was a phase II study in which it (or placebo injection) was given to patients undergoing concurrent external beam radiation. It only involved ~60 patients and the main outcomes were tolerability (it was well tolerated) and markers of bone turnover (alkaline phosphatase). Tantalizingly their results suggested an antineoplastic effect of the radium (slowed down PSA rise and the patients who received it lived longer) although the study wasn't really designed or powered to show this. Pain/analgesia and quality of life weren't measured at all. One assumes that these will be looked at in phase III trials and I hope these outcomes don't get lost as people get excited over this as an antineoplastic agent.
JAMA has a couple pieces recently as well.
First is a another installment of JAMA's 'perspectives on care at the close of life' series - this one on palliative care for patients with ALS. Like the rest of the series it is a comprehensive review based around a case and patient/family/clinician interviews. One of the most interesting aspects of the article to me was its discussion of tracheostomy and long term mechanical ventilation and that there's some evidence to suggest that many patients who receive this do so under emergency circumstances and without their explicit consent. Yikes.
Last is a 'coda' to their recent one on management of fatigue at the close of life. I really appreciated these lines. This is July, the time when fresh palliative care fellows are starting their training, and understanding this perspective is key to their education:
"I am deeply humbled by my experience in caring for Mrs D. She taught me much about balancing "cure" and "care" in patients facing chronic and progressive illness. She reminded me that the challenge of providing genuine "patient-centered" care—care is fundamentally grounded in a patient's goals and preferences—especially within the context of great uncertainty.Mrs D also taught me much about managing fatigue in elderly persons with progressive illness. Although I seemed to achieve temporary success with treatments like antidepressants, exercise, and appetite stimulants, I truly believe my most important intervention was a willingness and commitment to listen to her frustrations, fears, and hopes around this troubling and refractory symptom. My treatment attempts, regardless of their efficacy, seemed to at least validate her illness experience."
Tuesday, July 17, 2007 by Drew Rosielle MD ·
Sunday, July 15, 2007
Drew here: this is the first post from Pallimed's new contributer: Thomas Quinn APRN, CHPN. Tom is an advance practice nurse who has worked in the cancer pain & palliative care education world for much of his career. Among many other activities he helps publish the Pain Relief Connection newsletter through the MGH Cares About Pain Relief program. Christian and I have felt for a long time that there's so much good stuff going on out there that the blog would benefit from an extra voice and we are glad to have Tom aboard. When I asked Tom what he thought he'd be interested in blogging about he more or less indicated he was interested in everything (true to Pallimed's spirit) and I am hopeful he will extend the scope of articles reviewed on the blog (which, by the looks of his first post, he will). For those of our readers who think we post too much already: my anticipation is that we'll continue to have ~3 posts a week.
Tom - feel free to introduce yourself further & better in your next post & welcome aboard!
On to Tom's first post, which by coincidence has some consonance with Christian's last post & its comments:
Until fairly recently there has been little in the nursing literature on palliative sedation, compared to the medical literature, which has been discussing this topic intensively for about 15 years. As in the medical literature, much of the discussion involves controversial definitions and terminology, and ethical concerns. Naturally, it also includes the role of nurses, which is typically not addressed in the medical literature. (To be fair, attention to nursing sensibilities and roles is beginning to creep into the medical literature, but it feels more like an add-on than an integration). Interestingly, almost all of the nursing literature on this topic comes from Canada, Europe & the UK. I am aware of only 2 substantive articles (Lynch and Bruce et al) from US-based authors in the nursing literature (not counting the Position Statement of the Hospice and Palliative Nurses Association, published in their journal in 2003). The only nursing-focused paper in the medical literature is a study by Morita et al in Japan that revealed a significant emotional burden for nurses in caring for patients receiving palliative sedation.
The Claessens, et al. paper comes from Belgium. It describes the development of their palliative sedation protocol and how it is implemented in practice. They don’t get wrapped up in the debate about what to call this treatment nor do they spend a lot of time on ethical underpinnings. This is a “this is how we do it and it works very well, thank you” type of paper. Several elements distinguish this paper from most others in both the nursing and medical literature.
Despite (because of?) having two ethicists as contributing authors no mention is made of “double effect,” the most commonly invoked ethical underpinning for palliative sedation. As more research suggests that neither sedatives nor analgesics [used appropriately] seem to hasten death, and as the sedation is continually titrated to patient response, double effect may no longer seem as relevant as in earlier days.
I’ve always been a bit uncomfortable with double effect; it seems defensive. Claessens et al take a very different and unique approach: palliative sedation is a “moral duty” in the case of intractable and unbearable symptoms. It is “immoral” and denies respect for the person to withhold it when indicated.
There is a corollary to the “moral duty” approach, however: “the first and foremost element of palliative care is the prevention of palliative sedation.” In other words, optimal palliative care emphasizes timely and aggressive symptom management to prevent suffering and reduces the need for palliative sedation. The authors credit the use of their protocol for reducing the incidence of palliative sedation from 7% to 2.5% over 6 years.
The patient must request palliative sedation, there must be unanimity on the palliative care team that the target symptom(s) are intractable, and there is a 24-hour minimum waiting period between the request and the implementation. The authors do not address the situation of the patient who lacks decisional capacity. One hopes that they have a contingency, despite the explicit statement that a request from the family is insufficient.
Refractory existential, spiritual, or psychological symptoms seem to have equal footing with physical symptoms. Surely, they are all interrelated, but the authors sidestep the issue, published in various places as case reports, of patients who are not imminently dying and who have existential suffering as the primary refractory symptom.
All disciplines are fully integrated into the palliative care team. Nurses are “unconditionally heard” by other care providers on the team; the emotional burdens of decision-making are reduced through the multi-disciplinary process; there is always a nurse present when sedation is discussed with the patient by the doctor; nurses support each other during initiation of sedation, and feel comfortable seeking the emotional support of the doctors; debriefing uncovers problems and leads to further evolution of the protocol.
A remarkable endorsement of the protocol concludes: “A well-developed and implemented protocol provides emotional and ethical support, peace of mind for nurses, and prevents improvisation” (the italics are mine). Wouldn’t it be nice if we could apply that language to any number of protocols?
This paper describes the experience in a single institution, and therefore comes with built-in limitations. There is an extensive discussion of the nature of refractory symptoms. One of the descriptive terms is “inadequately manageable” symptoms, which strikes me as something less than intractable. Maybe it’s just an idiomatic distinction that works in Flemish or French but not in English. A big problem with discussions of intractable symptoms is that they tend to be specific to the location of the patient and the resources available. An inpatient palliative care unit with a well-established palliative care team in a major medical center has more resources to “prevent palliative sedation” than the many other venues where the majority of patients will receive care for advanced disease.
Overall, this paper communicates a sense of the maturing of palliative sedation: serious but no longer sensational; the subject for clear, systematic approaches to assessment, decision-making, and implementation.
Sunday, July 15, 2007 by Thomas Quinn, APRN ·
Friday, July 13, 2007
A couple of quick items for the end of a nice summer week (in Kansas City at least):
The Washington Post has an article on Palliative Care at GWU Hospital. First national PC piece that I have seen that quotes Cameron Muir, current AAHPM president, which is nice to see. It also includes the go-to quote getters for most national PC articles: Diane Meier, Sean Morrison, but surprisingly no Ira Byock. When is the West Coast or Midwest going to get some love? Good to see PC getting any good press though of course. It is surprising that they chose a palliative care team that does not have a strong MD component. The physician input is from residents/fellows or occasionally some geriatricians with PC cert who come into the hospital when needed. What I am curious about is the article was written by Joanne Kenen who has a media fellowship in hospice and palliative care. I did not know those existed.
While I do not know of any hospice chaplains with blogs, a voluntary hospital ER chaplain shares some thoughts on grief and medical loss after preparing to teach a class on that same subject. There are a couple of good links in her post for top ten things not to say to grieving people.
Here is an idea for a novel research paper in prognosis and hospice/palliative care patients: Hand-grip strength is a predictor of all-cause mortality in middle-aged and the elderly. Although the study itself isn't very clinically applicable (full of hazard ratios and quartiles which don't translate well in doctor-patient discussions), maybe this could be studied as an objective indicator for prognosis? Hand grip strengths at hospice admission and every month afterwards? Better work on your handshake.
Rarely do abstracts inspire or impress, but Dr. Pam McGrath and the Australian Journal of Rural Health do quite a great job in reviewing Aboriginal people's preference for location of death. Here is a great quote from that abstract in regards to the desire to die at home:
"...including the strong connection with land and community, a belief in ‘death country’, the importance of passing on sacred knowledge to the appropriate family member, the significance of ensuring that the dying individual's ‘animal spirit’ is able to return to the land, and the imperative that the ‘right person’ in the family network is available to provide the care."
From the previous post about hastened death in the news, Dr. Crippen at NHS Blog Doctor posts more information about the UK physician who was accused of hastening the death of two infants. Be sure to read through the comments section. And here you can find a BBC update.
And get ready for a big Pallimed surprise coming soon!
Nice summer picture courtesy of flickr.com user: acastellano
Friday, July 13, 2007 by Christian Sinclair ·
Wednesday, July 11, 2007
How did I miss this?
Did anyone else know about this?
How come no one told me?
Do you know about Opana aka oxymorphone?
If you have not heard about oxymorphone and you count yourself as an expert in opioidology and palliative medicine, you should probably read Chamberlin et al's review of oral oxymorphone in the Annals of Pharmacotherapy. I stumbled across this medication initially in "Pain Medicine News" that shows up in my mailbox without me ever subscribing to it. Many of the articles in the last issue kept mentioning oxymorphone, and I thought I needed reading glasses, because I kept seeing 'oxycodone' or 'morphine' as I glanced over it. Luckily I work with a great hospital pharmacist who found this recent article.
Some quick facts about oxymorphone:
Approved by FDA: June 2006
Brand Name: Opana (o-pawn-NA; O-pahna; o-pan-na; I 'm not sure-a)
Class of med: semi-synthetic opioid
Avail forms: PO IR 5, 10mg; PO ER 5, 10, 20, 40mg; IV
Past life: Numorphan tablets and PR taken off the market in the 70's secondary to fears of abuse as IV
Equianalgesic equiv: 30mg of PO morphine = 10 mg oxymorphone
Costs as quoted in the article:
Oxymorphone (brand) 5mg tab = 2.28
That will get you off to a good start, but you should really try to read the article as it covers some of the studies that proved efficacy for oxymorphone, and it is a good primer if you may be encoutering this medicine anytime soon. The authors do a good job of demonstrating some of the strengths and weakness of the oxymorphone placebo and comparison studies.
By the way, if any of you were wondering, neither Drew nor myself are on any pharmaceutical speaker's bureau's. Also, please read the medicine insert or the article and don't depend on just this post to become familiar with oxymorphone.
------>Hastened death in the news
'Hastening death' seems to be hitting the editorial pages a lot these days, maybe coinciding with the release of Dr. Kevorkian. The Times (UK) covers a UK physician accused of hastening the death of two premature newborns. Apparently, with the parents endorsement, he gave pancuronium in one case and a drug ' on the verge of what society finds acceptable' in the other case. I am still scratching my head over the pancuronium and that statement, although I do not want to make judgment in a case I know only a little about. What the second drug was will have to await further Googling by me. The journalist has a few good quotes but I would hope we have more optimism and civility in our societies to strive for better than this (bold is mine):
We possess immense medical technology, but have not studied the moral consequences of having it. We are incapable of addressing the concept of a good death. And we are failing disastrously to nurture doctors who, to those ends, seek only to reduce the suffering of dying patients.Change in medical culture and public education takes time, and in life and death matters, our society may require more subtle shifts in acceptance, lest we become to hasty and then regret our actions.
NEJM has an article on the Texas Medical Futility by Dr. Truog (free article). It is very even and the best part is the audio interview(free) along with it, where you can learn how to pronounce his last name. There is also a perspective piece on when you can't fix everything.
Penny Richards, Ph.D. at the Disability Studies Blog covers the last 100 years in assisted suicide with her review of a 1907 novel. Pretty good read and interesting to look at the perspective of hastened death from disability advocates standpoint. (via the very interesting Medical Humanities Blog)
And finally, this special article in the Boston Globe about a physician helping his father die. He even got in touch with Tim Quill about his dad. I had some issues with the article and don't have the time in this post to go into them here, maybe I will get to it in the comments section. But here is one part that I think is open for debate:
The doctors said we'd first have to stop infusing the paralyzing drugs, and then wait hours or even days as my fathers' failing kidneys tried to excrete what was already in his body. Only then could the ventilator be switched off. This plan would require my father to die much more slowly, increasing the chance that he might suffer.
Wednesday, July 11, 2007 by Christian Sinclair ·
Monday, July 9, 2007
1 picture, 3 related articles, 5 websites, and many thanks:
First is an article about decision-making about life-support for adults without surrogate decision makers in Annals of Internal Medicine. This was a prospective, multicenter, US-based study looking at ICU patients who lacked decision-making capacity, a surrogate, or an advanced directive (data based on prospective surveys of ICU attendings). Of note, the researchers went to great lengths to ensure that their data would be untraceable to an individual patient and physician.
Findings: of 3000 ICU admissions during the study period, 450 patients died and 5.5% of these (25 patients) deaths were of patients without a decision maker. Astonishingly, in 2 of the 7 institutions 25% of ICU deaths were in patients without surrogates. (This made me wonder how surrogacy was defined - it's a little unclear - did it mean only 'legal' surrogates defined by state law or someone designated by a health care power of attorney form? In my state, in the absence of a HCPOA designee, any interested party could be the decision maker. It's usually family but if there's no family it is often a friend or neighbor. I have a hard time imagining practicing where 25% of people dying have no one available to assist with decision making.) In total there were 37 patients for whom the doc did consider treatment limitations, including some for whom the doc would have recommended treatment limitations had there been a surrogate. 28 had DNR orders written; 15 of these had life support withdrawn. 32 of the patients were men. The major finding was that for these 37 patients most decisions were made (or not made) without consulting a 'hospital review' committee (such as an ethics committee) - only 6 of the patients had this (and one more had court involvement). For the other patients decisions were made after consultation with the core ICU team or another attending physician. The researchers also looked at state laws and hospital policies about what to do in this circumstance and found that less than half the time the decisions were made according to those standards (where they existed). Of course the hospital standards varied widely across institutions from no policy, to the attending being able to decide what was in the patients' best interests, to needing 'clear and convincing' oral evidence that a patient would want life support stopped.
The authors conclude "it seems prudent for individual physicians to involve multiple perspectives and disciplines in the decision-making process, such as with a hospital ethics committee," and I whole-heartedly agree. While I have been a steady advocate for keeping the state/government out of end of life decision making (and feel it should be kept out of this area as well) it also seems that given the gravity and likely finality of these decisions involving a group of people outside of one's own ICU team or (likely) chummy colleague is appropriate. Our obligation, always, is to act in the patient's best interests - and this often includes treatment limitations as someone dies - but we all have blind spots and these are the most vulnerable patients imaginable whose voices cannot contribute to defining their best interests.
Thanks to Dr. Dana Lustbader who alerted me to this article & #3 below.
Related to this is a perspectives piece in Annals about the 'false promise' of advance directives. It starts out with words that I really appreciated:
"I attribute [the problems with advance directives] to a fundamentally flawed concept: Advance directives simply promise more control over future care than is possible."
"Advance care planning must refocus from completing advance directives to preparing patients and families for the uncertainties and difficult decisions of future medical crises."
Then, somewhat perplexingly, the author provides a case study in which the patient/doc/and AD foresaw accurately and precisely what would happen to the patient (recurrent aspiration pneumonia), documented straight-forward and reasonable treatment wishes (comfort-only care including no antibiotics), these limitations were based on the patient's own experiences - he had been through this before. And the only reason things went poorly was because the hospital he was at was too cowardly to implement his wishes despite having the written directive PLUS his designated decision-maker saying 'follow the AD.' (Another family member objected to comfort-only care; the patient died on the vent.) So, in this case, what the AD failed to account for was the lack of moral fiber of a hospital's administrators. AD's are often not helpful or not followed because they're too vague and imprecise. Wanting to be comfortable when you're dying is a sentiment most of us will endorse but that doesn't necessarily help your family or doctor when you're in respiratory failure, 'need' to be intubated, might die but who really knows but probably won't really be restored to good health, etc. etc. AD's can't really help with that (unless they say never intubate me no matter what, as this patient's did, and then the issue is AD's being flagrantly ignored). Nevertheless the theme of the article is well-taken especially preparing patients/families for future decisions/crises/changes.
Along these lines Dr. Paul McIntyre, who emailed me about this paper, mentioned there are several project out there trying to accomodate the above reality about AD, particularly incorporating uncertainty about the future and recommended this paper & the following websites which have initiatives based in this model:
(Image is, apparently, of a real tattoo saying "Do Not Resuscitate" - found via image-Googling 'advance directive' - click on image for original post).
Finally the American Journal of Respiratory and Critical Care Medicine has a perspective on the pressure to withhold or withdraw life-sustaining treatments in the ICU. This one shares a couple of authors with the first Annals paper. Upon reading the article's title I first assumed this was going to be an indictment of 'too early' treatment limitations in the ICU. Instead it is a thoughtful overview of the factors at play, the pressures so to speak, that cause clinicians to 'push' for treatment limitations against family wishes. These include physician aversion to uncertainty and preference for 'rapid resolution' at the end of life, physician emotional concerns/discomfort with caring for dying patients, and 'bedside rationing' (intentional or otherwise). It briefly discusses futility and the Texas Advance Directives Act (a.ka. 'the Texas medical futility law'). In discussing futility it warns, "[B]efore taking unilateral action, physicians and nurses should remind themselves that prognostication is imperfect and that some patients will survive if their treatment is continued at families' insistence. In addition, clinicians should appreciate that some families are satisfied when their loved ones live only a few days longer, or if they survive with severe disabilities."
The article is framed as laying the groundwork for future research and one hopes that is the case.
And really finally KQED (the PBS station in San Francisco) has a video and 2 hours of a radio forum on end of life care available on their website (here: links of interest are in the yellow box on the right). Thanks to Judy Conner for letting me know about these.
Monday, July 9, 2007 by Drew Rosielle MD ·
Monday, July 2, 2007
This is perhaps my shortest post in 2 years - I'm on vacation until next week & my plans include idleness and frivolity so I won't be blogging.
Medinnovation blog mentions palliative care as an emerging field in the context of primary care docs searching for better pay and more job satisfaction. Fair enough, but in the process what palliative docs do is described in a totally de-medicalized way and sounds a lot like, frankly, social work (nothing against social work! - see below).
"These physicians coordinate care for patients with terminal illnesses, comfort the dying, commiserate with spouses and relatives, arrange for care in homes and tend to patients spiritual needs."
To me it really hit home just how little people, even other docs, understand what it is we do and the image of us sitting at the bedside, holding hands, and dropping Roxanol under the tongue persists. I strongly feel that we (and here I mean palliative docs) should deliberately and firmly present ourselves to our colleagues as docs doing nothing more than providing good medical care for the severely & chronically ill and dying. Terminal extubations? Good medical care. Foregrounding patient emotional and spiritual needs? Good medical care. Etc. (Via Kevin MD.)
Happy July 4th to our American readers (image from the NY Times; need Times Select to watch video).
Monday, July 2, 2007 by Drew Rosielle MD ·