Wednesday, November 28, 2007
Journal of Clinical Oncology has a paper on elderly cancer patients' desire for information and involvement in treatment decisions. The study involved 75 (out of ~250 originally screened) patients over 70 years old and within a few months of a diagnosis of metastatic colorectal cancer. 80% had ECOG performance statuses of 0 or 1 (no symptoms or mild symptoms without disability). The patients were asked a variety of questions about their understanding of the cancer/prognosis; wish for prognostic information; how they make decisions; etc. Their physicians were also asked questions about what they thought their patients preferences were.
The major findings were: only 44% of patients wanted prognostic information (about survival); males were more likely to want prognostic information but no other demographic or disease characteristic predicted wanting to know prognosis; there was an even split between patients who wanted more active/collaborative vs. more passive treatment.
The really, really interesting findings were: 1) only 25% of patients had received prognostic information on survival from their physicians - including most of those who wanted it, 2) 'most' (the authors frustratingly don't give a number on this) patients reported that they believed 'chemotherapy was somewhat likely or very likely to cure their cancer,' and 3) patients who actually had received prognostic info from their docs were less likely to believe #2. And, consistent with previous research findings, physicians were overall very poor predictors of which patients wanted prognostic info or what the patients' decision-making preferences were.
The abstract to this article initially caught my eye because the 44% wanting prognostic information struck me as really low - many other studies have found that the vast majority of advanced cancer patients want this information (at least in the US and Australia). Reading the paper, however, and realizing that over half of these patients (96% of whom were starting chemotherapy) mistakenly thought that the chemo had a decent chance of curing them. These, then, were people who did not necessarily perceive that they had a life-limiting (and by all reasonable definitions terminal) illness and may not even realize that discussions of prognosis/time were, potentially, timely. (Desire for prognostic information has been closely correlated with perceived survival - the sicker you are the more likely you are to want to talk time.)
The clinical message here is pretty simple - talk to your patients about what they want to know and how they want to make decisions (this is all very consonant with comments on a recent post about never assuming anything about your patients). The other issue is the persistent and repeated finding in many different studies that a substantial number of patients with incurable cancers seem to think they're receiving potentially curative therapy. In this study, in particular, the numbers are so high (over 50% - my memory tells me the figure is usually a third) - despite the relatively really high educational level of the patients - over 60% had post-high school education which is quite high for most studies like this. It strikes me that this question, itself, is worthy of a study - how much of this is people choosing to believe what they want to believe vs. unclear communication with the oncologist vs. other factors?
(Full reference: Elkin EB et al. Desire for information and involvement in treatment decisions: elderly cancer patients' preferences and their physicians' perceptions. J Clin Oncol. 2007;25:5275-80. DOI: 10.1200/JCO.2007.11.1922)
Well what is that 'blogging on peer-reviewed research' icon at the top of the post all about? Click on it to find out. It's from the Bloggers for Peer-Reviewed Research Reporting (BPR3) project which is, among other things, a way of marking and sharing blog posts which seriously discuss peer-reviewed research:
"Bloggers for Peer-Reviewed Research Reporting strives to identify serious academic blog posts about peer-reviewed research by offering an icon and an aggregation site where others can look to find the best academic blogging on the Net."
This is something which we have been striving to do at Pallimed from the beginning (although certainly not with all our posts) and we were pretty excited about the project when we heard about it.
Placing the 'blogging on peer reviewed' research icon on a post is not just a vanity plate on a blog post - it enables the post to be identified through search functions as a BPR3 post, and eventually there will be an aggregator site collecting/sorting all the BPR3 posts (this is still in the works - you can sort of do it now at Technorati). So, we're joining the movement, and hope that it thrives.
The only difference you'll likely notice - besides the icon on those posts - is that we will start placing the full article reference (& doi if available) per the BPR3 posting guidelines.A nod to Christian for finding out about this and suggesting we do it - thanks.
Archives of Internal Medicine has a paper on depression in COPD patients (common and undertreated although not convincingly/strongly predictive of hospitalization or morality).
Journal of Supportive Oncology has a fascinating article describing an 'oral PCA' system for cancer patients (abstract here - JSO always has free full-text available). Basically it's a bedside device for dispensing a patient's oral breakthrough meds (with a lock-out - e.g. no more than 2 pills in 4 hours etc.) without the involvement of a nurse or someone else to dispense it. It uses a radiofrequency tag technology to prevent anyone besides the patient from accessing it. The study more or less presents acceptibility/feasibility data from a pilot trial.
My initial reactions. Pro: patients don't have to wait for nurses to dispense the drug which is good; patient control is a nice idea. (Potential) cons: could decrease pain assessment; divertable. The real question is: what is the problem this is trying to fix? It may be a legitimate one but if the purpose is to improve pain management the problem in hospitals is not due to a dispensing delay of oral analgesics....
And finally, Christian got really annoyed with this recent NY Times article about the whole so-called Medicare 'hospice cap' situation and since he is not going to post for a few days I offered to post it.
How about this nugget:
'Some providers have survived only by aggressively recruiting new patients, using this year’s Medicare reimbursements to pay off last year’s cap charges, while stalling for Congressional relief. Ms. Youngblood, the Hometown Hospice nurse, said that after she visited her charges — doling out their pills, and turning the sweet potatoes in their ovens — she trolled for new patients at nursing homes and senior centers.
At the small hospital here, she said, the nurses joke about her “marketing” forays: “They’ll say, ‘Here comes Nurse Kevorkian. She has no shame.’ And I’ll say, ‘Look, I have to have a paycheck, too.’”When 'trolling' and 'Kevorkian' are one sentence apart...now that's the face of hospice I love to see in the media.
I actually had been unaware of the hospice cap issue until the Hospice Guy began posting about it recently (see his last 4 or 5 posts here at Hospice Blog for an indepth discussion of it).
Wednesday, November 28, 2007 by Drew Rosielle MD ·
Monday, November 26, 2007
Early this year I posted a preview section for the AAHPM/HPNA conference in Salt Lake City. Of course last year when I decided to post it, it was too late for people to people to change their registered pre-conferences, so this year I am going to cover the pre-conferences early enough to give you some thoughts on what might interest you. Today, I highlight the AAHPM pre-cons, later the HPNA pre-cons.
I started doing the preview because one of my favorite things about conferences is talking to other people to see what they are interested in, so feel free to tell us what you are going to and why. If you are giving any of these talks, I encourage you to leave some comments to get more people aware of your talk. There are some good ones!
Wednesday January 30th, 2008
The AAHPM includes this as part of a series (A,B,C) with the other sessions usually taught at Current Concepts or other times throughout the year. Since I completed a palliative medicine fellowship, I have not seen the need to go to this, although there may be some tips to be picked up here. I have not heard anyone ever rave about the regulatory module (YAWN! (but important if any Medicare officials are reading this blog!)) , but I think that is probably due to the nature of having an important foundation in hospice regulations if you plan on being a hospice medical director. Regulations...you gotta know them, you may not like them, you may think they don't make sense, but they are here to stay. Until they change next year.
Quality Measures for Hospice & Palliative Care
by Dy, Hanson, Asch, Wenger, Walling
Moving Beyond "I Hate These Discussions": Gratifying Tools to Facilitate Patient and Family Decision Making Near the End of Life
by Menkin and Weiner
by Davis, Lasheen, Walsh, LeGrand
Is it just me, or does that list not seem impressive if you leave out first names. Davis means nothing to me, unless I see Mellar in front of it, same with Walsh without the Declan, and LeGrand is unique enough to stand alone. The good folks at Cleveland Clinic return with a comprehensive opioid talk. A good one for feeling more confident in titration and conversions which is something all good palliative care practitioners should feel comfortable with. While MD based, I think this could be very beneficial for nurses as well since they often are catalysts in titrating opioids and the first line in the home at observing potential toxicities.
arvard PCEP are great opportunities that compresses and shares many years of experience in just a few hours. For more info on each one, click on the link for the discipline above. These are sponsored by the College of Palliative Care and have NO FEE!! Thanks CPC!
by Casarett, Ferrell, Tulsky, Kramer, Bakos
Also a NO FEE talk, this talk is a similar theme to pre-cons in the past few years. We got to build our research base people! Hopefully many will get inspired and do some great non-observational research (i.e. RCT's and treatment trials). I found this talk very helpful/inspirational in the past, but the one thing this talk will likely not get you is an infrastructure to do research, so hopefully you already have one in place, because you won't learn how to make you community hospice into a research institute in the next 24 months. Great speakers by the way and always nice to have Alexis Bakos from the NIH to help get us the inside scoop.
Mediating Ethical Dilemmas at the End of Life
by Williams and Arnold
While no class on ethics will ever tell you the answer to every ethical dilemma you have encountered, having a structural framework that is clinically applicable and teachable (as this session promises) is a great tool for our field. I am not sure what a MB ChB is, but Charlotte Williams, MBchB from UAB joins Bob Arnold for what looks to be a new and invigorating addition to the pre-cons.
by Pulchalski, Blatt, Lunsford, Baird
FICA is your friend. No really. This is a great tool, and this session will highlight this tool and other strategies and themes. I have not yet had the pleasure to hear Christine Puchalski speak, but I have heard good things about her sessions in the past. This session should be a good one, and if you think you know FICA, they will likely expand your understanding and flexibility in approaching this powerful subject. I just hope the session has a wide audience and attracts more than just the choir (sorry) so that some people become more comfortable about spirituality and medicine.
by Yellig, Fine, Panchal
Overheard conversation at AAHPM/HPNA in 2015:
Sue: "Hi! I'm a Spiritual Palliativist."Sorry that became more of an editorial. Final verdict: looks like a good session.
Tom: "Nice to meet you. I am an Interventional Palliativist. Have you met Joe? He is our new Conversational Palliativist."
I will review the HPNA pre-cons in the next couple of days. And I am by far not the final word on any of these. Pick what interests you and feel free to offer comments about why you are going to any of the above session.
- Interesting Quote of the Month with Palliative Care Influences:
“Life is not what we experience, it is what we remember and how we remember in order to retell it.” - Gabriel Garcia Marquez, Living to Tell The Tale
- Pallimed represent! I (Christian) will be at the Cachexia Conference in Tampa next week. I will have a Pallimed sticker on my badge, so feel free to come say hi if you see me, or post a comment or email me if you are going to be there and want to got to a Tampa Bay Lightning game Thursday night. I plan to report back from the conference to tell all Pallimed readers how to defeat cachexia!
- Tom recently posted some info on "disadvantaged dying." Pallimed reader K Jacobs chimed in with this link to the AAIDD position statement on EOL care in the disadvantaged.
- Edwin Leap, MD reflects on witnessing the impact of death in the ED, and how it seems like an alternate universe when he comes home to his family. I think this is something that could be echoed loudly by our field. Seeing death on a regular basis in our work makes little things in life much more valuable. It would be great to see some more palliative care oriented blogs to balance out the ED ones. (via Kevin MD)
Monday, November 26, 2007 by Christian Sinclair ·
Tuesday, November 20, 2007
Happy Thanksgiving to those of you who celebrate it - I won't be posting until after the holiday weekend.
Pain has a randomized, placebo controlled trial of a cannabinoid for neuropathic pain. The study involved using sativex (an oral-mucosal cannabinoid spray which uses THC-standardized botanical material from marijuana plants as its base). It involved ~120 patients (mean age 53 years; all had persistent pain for more than 6 months and most were on multiple other meds; mean pain ~7/10; most had focal neuropathic syndromes like post herpetic neurlagia, radiculopathies, or neuropathic pain involving a single limb) who were randomized to sativex or placebo (after a test dose, patients self-titrated their own sativex dose using a protocol) and followed for 5 weeks. Importantly, only ~20% of patients were prior cannabis users. Both active and placebo sprays were flavored with peppermint to prevent unmasking, and intention to treat analysis was used. It was an industry sponsored study.
Patients receiving sativex had a statistically significant decrease in pain at 5 weeks (and it took well over a week for the pain curves to diverge) - average decrease was 1.5/10 on the 0-10 scale (a 22% reduction) - placebo patients' pain didn't change significantly. They estimated a number needed to treat of ~8 to get a 50% pain reduction. 18% of sativex patients withdrew due to side effects (vs. 3% of placebo patients - damn that peppermint spray!) - the autonomic side effects appeared to be more prominent & disturbing to the patients than the psychiatric ones. Unblinding (patients deducing if they were receiving the active drug or not) was not measured.
My gloss on this is that it's evidence that sativex is a effective analgesic, although most patients get only a mild response (a NNT of 8 for a 50% pain reduction is not great compared to tricyclics or gabapentin which tend to be in the 3-6 range). While side effects were a problem here, it's encouraging that 80% of the patients were ostensibly cannabinoid naive suggesting that it can be effective even in patients not pre-selected to tolerate cannabinoids. Sativex however isn't available in the US, and is pharmacologically distinct from other cannabinoid products (like dronabinol). Any of our Canadian readers using it in their patients for pain?
Image is of cannabidiol (from Wikipedia).
There have been two recent journal issues devoted to research issues surrounding quality of life and symptoms in cancer patients.
Journal of Clinical Oncology has an issue looking at 'patient-reported outcomes' in cancer research. 'Patient reported outcomes' more or less mean symptoms and quality of life as reported by patients/research subjects. The issue contains a dozen summary articles from the National Cancer Institute's Patient Reported Outcomes Assessment in Cancer Trials (PROACT) conference from last fall. Most of the articles read like committee summaries (which they are), and I'm not going to belabor them here except to say it provides a snap-shot of the international research & funding issues about "PROs".
There is a certain sense of the orphan-nature of PROs in cancer research throughout, best put by the summary article:
"Yet, it is fair to say that questions about value added have been raised more frequently about PROs, and HRQOL specifically, than about any of the prominent biomedical outcomes. In part, this reflects the acknowledged importance of survival and disease-free survival as primary objectives of much cancer therapy. But it also reflects recurring concerns among some clinicians, regulators, and even cancer trialists about the meaning, technical quality, interpretability, and decision relevance of the PRO measures themselves. These issues are important because they challenge the validity, or at least the usefulness, of measuring cancer outcomes from the patient's own perspective. However, one of NCI's Strategic Objectives is "to ensure the best outcomes for all, including improving the quality of life for cancer patients, survivors, and their families." Thus, it would seem vitally important to measure the impact of cancer and its treatment on QOL from the perspective of those individuals living with and surviving cancer. For this objective to be realized, we need patient-reported measures of outcome that are valid, reliable, responsive, clearly interpretable, and decision relevant."
The other issue is from the Journal of the National Cancer Institute (Monographs) and is about quality of life and symptom research in cancer trials. These articles come from a symposium in 2005 about QOL measurement & meaning sponsored by the NCI's CCOP. It's more clinically oriented than the JCO issue, focusing more on the clinical relevance and use of QOL measurement in research.
It's mostly about health-related QOL, and avoids the perplexing philosophical questions about what QOL really means, but gives a few nods to 'global' QOL (excerpt is from this article):
"There is evidence that overall QOL is a distinct concept from the other components of the model of Wilson and Cleary, providing different information than symptoms, functioning, and perceived health status. In a study of 493 older patients, Covinsky etal. demonstrated a lack of concordance between patient ratings of health and their global QOL. They found that 43% of those with the worst physical functioning rated their global QOL as good or better. Conversely, of those with the best physical functioning, 15% thought their QOL was only fair or poor. They also found a lack of concordance for psychologic health and QOL. Of those with the fewest psychologic symptoms, 21% rated their QOL as only fair or poor. In addition, patients consider different aspects of life when rating QOL than when rating health status. Based on a meta-analysis of 12 studies in chronic disease, Smith et al. developed path models that demonstrated that patient ratings of their health and global QOL were influenced by different things. Perceived health status was most affected by physical functioning and to a lesser extent by emotional well being. On the other hand, global QOL was affected to the greatest extent by emotional well-being and less by physical functioning. A logical extension of these findings is that conclusions may differ depending on whether outcomes are measured in terms of health status or global QOL, particularly if there is lack of agreement between them. This provides an argument for the inclusion of overall QOL, in addition to measures of symptoms, functioning, and health status."
Together, the paper mentioned above, and this one here, make a good introduction to the measurement and meaning of QOL assessment in cancer research and would make good articles for the teaching file (particularly for fellows - I wouldn't necessarily throw these at medical students).
Postgraduate Medical Journal has a review of managing thromboembolic disease in the 'palliative' setting. It's a general review of the topic, and makes some eyebrow raising statements. Notably it cites research to suggest that 25% of British oncologists were unaware of the elevated risk of thrombotic disease in cancer patients (looking at the study it cites about that it seems it was mostly about the increased thrombotic risk associated with tamoxifen and similar hormonal therapies). It also makes this statement:
"In the case series reported, most patients continued anticoagulation until they entered the last few days of life. These data, while shedding light on how long we should continue anticoagulation, also suggest that the majority of palliative care patients are appropriate for investigation and treatment of suspected VTE. Sometimes the biggest danger faced by the palliative care patient is not a complication of the disease process but rather the paternalistic nihilism inflicted on them by the attending clinician."
To be clear: there was a case series (lead-authored by the author of this review) which showed that one palliative service used anticoagulation until the final days of life - these descriptive data have now apparently morphed into normative data on what we should be doing, and, indeed, if we're not doing this, we are inflicting paternalistic nihilism on our patients.
What really gets me about this is that the sum of data we have on anticoagulating dying patients is a few RCT trials showing low molecular weight heparin is probably better than coumadin for VTE disease in advanced cancer patients; some descriptive data on what some centers are doing; and some tolerability data about LMWH shots (patients don't seem to mind them). What we don't have is any controlled data on actually anticoagulating patients with very short prognoses (less than a few months), and while one can reasonably argue that of course we should be anticoagulating these patients one could also reasonably argue that we don't know the risks of this and the benefits may not be great. We don't know - things that seem to make sense often don't turn out to be true in medicine - and because of that it seems like intimating patient abuse ('inflicting nihilism') is a bit premature.
It is not yet time for mud-slinging. That said, I'm looking forward to the die when I don't have to argue with hospice agencies about low molecular weight heparin.
A couple e-pubs from Journal of the American Geriatrics Society.... One is a review of hypodermoclysis to treat dehydration. It's a straight-forward narrative review, mostly geared towards nursing home patients, but provides a good single source for the research base underlying the practice's safety and efficacy.
The second is about using cardiorespiratory fitness to predict mortality in the elderly long term. It shows that yes, long-term mortality (over a decade) is closely associated with CRF (in this case as measured on a treadmill test), but doesn't tell the average clinician much more, unless you're a prognosis junkie, as is one of the Pallimed contributors.
Tuesday, November 20, 2007 by Drew Rosielle MD ·
Saturday, November 17, 2007
#1) Dying a Secular Death
The process of dying and the final result are often times that people reflect on some of the deeper religious issues. People of strong faith find great support or maybe difficult questions to their beliefs, people who never had a traditional belief go back to their family roots or adventure out to discover religions that they have never been exposed to. Whatever the experience near the end of life a common recurring theme is belief, religion, spirituality, whatever you want to call it.
Hospices and palliative care teams embrace this discovery of spirituality and are usually very open to all faiths. Most HPM practitioners I have worked with are eager to learn about different traditions and backgrounds and how those beliefs are important to their patients. But I have seen hospice and palliative care teams struggle occasionally when working with those without a traditional faith, specifically atheists and agnostics. Maybe it is the lack of a framework or belief in the afterlife that is common to so many religions, maybe it is the long-held negative yet erroneous view of atheists as people without morals, I am not sure what it is exactly. Without a common traditional religious structure to find common language care for the unbelieving patient can be more difficult for some. And I don't think the answer is as simple as, "Well at least they don't need to see a chaplain."
A reader tipped me off to a score of essays published in Free Inquiry magazine (Oct/Nov 2007) about experiencing the end-of life from a secular/atheist perspective. Most of the essays address the survivors issues such as how to have a ceremony without the religious infused language, or even whether to have one at all. I have read most of the essays and there are not many that give voice to the dying person's view on unbelief as they are dying, which is a shame, but understandably a hard task to do given that dying patients rarely write essays.
There are surely some to skip, such as the one on Cyronics, but others seem to give some good general advice from the bereaved. Some of the best quotes I think can be applied to all patients and families in general.
Janet Factor writes in "The Gift of A Wise Man":
"...the price of love is loss. No matter how happy, no matter how perfect and true the love, it will one day end in tears, for we cannot escape our own mortality."Richard T Hull in "Celebrate the Myriad Ways":
"Without the understanding that we are mortal, we cannot appropriately value our own lives."
"We could have taken offense at much of what went on at the service and much of what was said to us before or afterwards. But it occurred to us that uncritically accepting the outpouring of others’ consolations was the essence of what it is to be a humanist: one who seeks to understand and celebrate the myriad ways in which humans try to deal with the tragedies and stresses of life."Jean Kazaz in "People Don't Die, Do They?":
"Tolstoy’s terror of death did not subside until he underwent a religious conversion that convinced him that there really is more life after death. Nothing else would calm the panic that he so artfully projected into the character of Ivan Ilyich. My children were much more Tolstoyan three-year-olds than I ever dreamed I would have, but, in the end, they didn’t need Tolstoy’s solution. The subject simply went away."The essays are all available free online, or you could possibly find Free Inquiry magazine in a large bookstore. (It took me going to three different bookstores to find this magazine.)
Also note the recent JPM article by Marilyn Smith-Stoner, RN on End-of-Life Preferences for Atheists for further info.
(Thanks for the tip Kathleen J)
#2) Hospice Documentary - 203 Days
Bailey Barash, a documentary filmmaker, has a great 30 minute documentary about the last 203 Days of Sarah Neider, a hospice patient. You can watch the film for free, but if you are involved in end-of-life education at any level, I highly recommend you pick up a DVD (Pallimed is getting no kickbacks, FYI). And you are supporting a filmmaker who is a hospice volunteer, and encourage others to focus on telling these great stories that we all see everyday. It is important to note the filmmaker has a lot of production experience including being an Executive Producer for CNN, so this is not just an amateur production.
After watching the film, it was easy to see how easily the short film could fit into hospice agency orientations, fellowship programs, Hospice 101 talks with medical/nursing students, whatever. The basic story live of a hospice patients last several months reviewed in under 30 minutes makes this a valuable resource to our field.
->AAHPM and HPNA have selected the 9 cases to be presented at the Annual Assembly by HPM practitioners in training (RN, DO, MD, etc.). It was a lot of fun reading the cases and there were a lot of good ones, so it was hard to select the final 9 (up from only 6 cases we were slotted for initially!) You can read more about the process at the unofficial AAHPM PIT-SIG Blog.
->Grand Rounds was recently covering pain issues at Counting Sheep (a nurse anesthetist blog)
->ERNursey and SICU Queen get into it about over-treatment in the hospital. Warning some language may not be suitable for all ages.
->Andy Billings, Susan Block and the faculty at Harvard are at it again. They have finished yet another year of PCEP, which is a great opportunity for HPM practitioners of all levels, and have now decided to tackle another working conference with the Harvard Medical School Palliative Medicine Leadership Forum for Junior Faculty Leadership Retreat. The deadline is December 7th, so get crackin'. The applications for PCEP are due January 15th, 2008 for the next session too. PCEP (Palliative Care in Education and Practice) is a great educational and networking resource. To show you how much fun it is I made a video after my experience in 2004.
Questions for readers:
1) Any revelatory experience in caring for atheists at the end of life?
2) Are you a alumni of the Harvard PCEP program, and if so, what would you want to tell others about it?
Feel free to leave some comments!
Saturday, November 17, 2007 by Christian Sinclair ·
Tuesday, November 13, 2007
Health columnist Jane Brody is on Part 2 (Chronic Pain: A Burden Often Shared) of a 3-part series on chronic pain in the New York Times. Part 1 (Living With Pain That Just Won't Go Away) was in last week's Health Section (Tuesdays). NYT articles online are now free.
From the NFCM 2007 page of the National Family Caregivers Association:
Every November the President of the United States proclaims November to be National Family Caregivers Month (NFC Month). It is designated as a time every year to thank, support, educate and celebrate more than 50 million family caregivers across the country currently providing an estimated $306 billion in "free" caregiving services. Speak Up For Your Rights This year NFC Month will focus on family caregivers speaking up for their rights. This is an opportunity to advocate for stronger public policy addressing family caregiving issues and raise awareness about community programs supporting family caregivers. This is also a time to focus on encouraging family caregivers to always... Believe in Yourself . . . Protect Your Health . . . Reach Out for Help . . . Speak Up for Your Rights.
It is not surprising, but worth noting, that some of Brody's advice to caregivers of those with chronic pain is very similar.
"Disadvantaged dying" is a term I lifted from an interesting commentary in the International Journal of Palliative Nursing on palliative care for those with intellectual disabilities. I think this dovetails nicely with some of the recent discussion of competence, including competence in those with psychiatric disabilities [See also the following item]. The authors describe a nascent model program in a community in the UK that focuses hospice and primary care services on patients with intellectual disabilities and their carers. One of the authors is a nurse with a long-time interest in the care of people with intellectual disabilities. The other two are nurses in hospice and primary care, respectively. They point out that this population is living longer than in the past, and therefore subject to the same chronic illnesses of aging as the rest of us. They also imply that their carers are also more likely to die before they do--in hospice or otherwise--and so need information and support tailored to their needs. Very little research has been done on end-of-life issues with this population. There are serious practical and ethical questions, in addition to the general invisibility of this group. The authors describe a systematic and collaborative approach (what a concept) to developing and implementing services in the community and education initiatives for hospice, primary care, and disability professionals, as well as carers and the clients themselves. They point out that having an intellectual disability doesn't mean you won't have preferences or can't make some choices.
Unfortunately, this journal is difficult to access. Not many people or libraries in this country subscribe to it and it is not indexed in PubMed. This particular issue, from Sep 2007, is not yet indexed in CINAHL, and the publisher does not make articles available online.
Also, check out this new EPERC Fast Fact & Concept (co-written by Drew): #192: Palliative Care for Adults with Developmental Disabilities.
Competence/decision-making for those with mental illnesses
Some of you may have missed this link in a comment from a reader: Competence Issues in Self-Directed Care. This is an article on self-care and decision-making for people with mental illness. It is on the Substance Abuse and Mental Health Services Adminstration's web site.
Advance directives don't apply to those with mental illness because of legal restrictions, according to a short letter to the editor by Thomas Szasz, reponding to the UK's recent law mandating that advance directives must be honored. Szasz is a psychiatrist (now well into his 80's) who has always been at odds with the psychiatric establishment for what he sees as coercive and paternalistic approaches to management. He takes a civil rights approach to "freeing" psychiatric patients from restrictive laws and "incarceration" that prevent them from making meaningful decisions in their own self interest.
Tuesday, November 13, 2007 by Thomas Quinn, APRN ·
Sunday, November 11, 2007
Supportive Care in Cancer presents another, negative, randomized controlled trial of methylphenidate in cancer patients. This study looked at ~60 (mean age 50) women with early & resected breast cancer who were starting adjuvant chemotherapy and randomized half to methylphenidate or placebo; this was a trial of prophylactic methylphenidate with the hope it would alleviate the fatigue and other symptoms associated with adjuvant chemotherapy. They took 10mg bid of methylphenidate throughout their chemo (average ~80 days), after a week's lead-in on 5mg bid (it should be noted that they used d-methylphenidate so these are hefty doses). Fatigue scales and a bunch of neuropsychiatric tests were run (looking at memory, attention, etc.).
There were no significant differences found between the groups regarding fatigue, cognitive changes, or quality of life. However, the study was severely under-powered - the researchers' goal was an N of 170 and they only achieved 60 (they noted that many of the subjects were reluctant to take another medication, particularly methylphenidate). So, unfortunately there is no good way of knowing if methylphenidate was doing something beneficial - if it was the magnitude of its effect is probably small. This seems like one of several recent, well-designed, supportive cancer studies I've come across lately which have suffered from poor accrual (although I can't off the top of my head remember what the others are) which is disappointing and underlies the difficulty of doing this research (particularly, perhaps, with scary-sounding drugs like 'Ritalin').
Unlike the last RCT looking at methylphenidate, this time the patients were not called daily by a research nurse, so no comment can be made about the hypothesis generated by that trial. One wonders, though, if this trial was born to fail - it has yet to be shown that methylphenidate is helpful for people actually experiencing fatigue, let alone for an undifferentiated group of people, many of whom will never significantly suffer from fatigue anyway.
Advances in Chronic Kidney Disease's latest issue is on mental health/symptoms/palliative care in patients with chronic kidney disease. There are two articles of particular relevance to palliative care.
First is one on, well, palliative care in CKD - focusing on illness trajectories, communication, and hospice use. It's a general review aimed at nephrologists.
The second looks at dialysis discontinuation. It reviews the research literature on the topic and discusses the practice at length. Apparently 25% of deaths of dialysis patients in the US are preceded by a decision to stop dialysis (assuming that most of the remaining 75% didn't die suddenly/unexpectedly I find this figure stunningly low). The study dramatically presents the wide variations in practice/experience around dialysis abatement in different regions/countries confirming practice around this is highly dependent on local culture and practice. While a thorough, in depth review of the topic, what I found most interesting was the author's suggestions for moving the research away from 'medical' priorities to patient/family centered priorities - information needs, communication needs, family needs.
A couple briefly:
Postgraduate Medicine recently had a review of delirium in advanced disease. It's pretty basic.
Internal Medicine Journal has a study showing that palliative medicine docs aren't any more burned out that other specialists (read another way - they're just as burned out as other specialists). These are docs in Western Australia, where my parents are from and where I lived most of my first 7 years, so maybe I'll head back home when I hit my midlife slump. Seriously, though, this is going to be an important issue as our profession matures. (How much grief and conflict can one take? How do we, as a professional community, prevent burn-out?)
Last week's This American Life (a public radio program) was called 'How to Rest in Peace' and included 3 pieces: two about coming to terms with a parent's death (murder) and which involved an interview with a man whose mother openly planned her own suicide for 20 years before actually doing it (she was so afraid of a horrible death 'with tubes' etc. that she had meticulously planned a suicide to be carried out before she got really ill). The first two, although about murders, were also about grieving, 'closure' (or not), and meaning making (or not) after a traumatic death - and a lot of it will resonate with anyone who witnesses grief in their work. The last segment is one of the few personal narrations I've encountered about what is essentially an 'assisted suicide' (no physicians were involved) and is interesting listening. It brings up issues of meaning in decline (or not), what a good death is, 'controlling death,' and the effects of such a death on a family (in this case it wasn't necessarily bad).
TAL broadcasts are available for free streaming or download/podcast.
Sunday, November 11, 2007 by Drew Rosielle MD ·
Tuesday, November 6, 2007
2 articles about which I mostly opine on what I wish they said, and a couple more for good measure.
NEJM recently had a clinical practice review on assessing 'competence' of a patient to consent to treatment (free full-text here).
The author responds to the question implied by my use of quotation marks around 'competence' above with this:
'The terms "competence" and "capacity" are used interchangeably in this article, since the oft-cited distinctions between them —competence is said to refer to legal judgments, and capacity to clinical ones — are not consistently reflected in either legal or medical usage.'
I had thought that that distinction was consistently maintained and I think it does make sense to linguistically distinguish between those patients who have been deemed medically and legally to indefinitely lack the compentence to make medical decisions and those who are deemed to lack the capacity to make the medical decision before them - like a delirious patient who needs an operation - without necessarily an implication of the permanence of the incapacity.
The article itself is the most basic of overviews and is likely not of interest to the established palliative practitioner, but is a good one for the teaching files.
The case that the article references involves an elderly woman with perhaps some cognitive impairment and depression who declines a life-saving amputation. The author notes that the patient likely has capacity to make this decision, but I was left hoping he would discuss what we should do about someone who is incompetent but who can still express wishes about what they want, and who refuses to assent (since they can't technically consent) to potentially life-prolonging medical care. What if the patient was schizophrenic (with active and disabling psychosis) and refusing amputation? What if it wasn't amputation but life prolonging chemotherapy that was indicated? How do we accomodate patient's values/wishes even if they themselves cannot really understand? And what if those wishes/values conflict with what their legal decision maker (guardian/proxy) wants for them? These are issues which I encounter from time to time, and I usually muddle through them with getting second opinions, consulting ethics, and talking talking talking until there's consensus, and the case here would have been a prime example of talking about this.....
I've never done a lit search on it: anyone know of any good papers about this?
Seminars in Dialysis has a discussion about requests for dialysis in severely brain injured or demented patients. It's a practical, chatty overview of the topic, which seems to be directed at nephrologists who don't have much background knowledge of end of life communication and decision making. I was hoping it would address the practice which I've seen occur numerous times & in several locales of nephrologists' decisions about withholding dialysis being the catalyst to family members and/or primary teams to realistically address that someone is dying and implement appropriate terminal care. These situations can happen, for instance, with critically ill severely demented patients or patients with end stage liver disease who are declining despite an escalation of care in the ICU whose care plan gets (dramatically and appropriately) re-defined towards comfort care when the nephrologist, consulted because the patient is in acute renal failure, tells the primary team or family that dialysis is not indicated/they're not going to initiate it because the chances it will help restore the patient to health are negligible. At times this can happen after protracted conflict between the primary team and family about care goals. (And at times of course the nephrologist's recommendations are summarily rejected by the family/primary team/both.)
Anyway the article doesn't particularly talk about this, so I'm not sure why exactly I am, other than that I've always been curious to see what the discussion within the nephrology community has been about this. The article does make some very welcome points about advance care planning in dialysis patients including discussing (from the beginning) circumstances under which the patient would not want to continue with dialysis.
CMAJ has a qualitative study on perceptions of 'futile' care in the ICU (free full-text here). It comes from interviews of ICU clinicians (docs, nurses, respiratory therapists) about 'futile' care. A lot of what is mentioned is what one would expect. What struck me was the sense that these clinicians had of their inability to change outcomes in these situations, as well as a lack of institutional support and fear of liability. Not wanting to discount the suffering of patients/families in these situations but it is clear that these are situations which cause a great amount of suffering for clinicians themselves: feelings of inadequacy, impotence, lack of support, and fear.
"We did not attempt to generate a consensus definition of futile care because we felt that the effort itself would have been futile in view of prior unsuccessful attempts by others in the medical literature."
This is not just a little joke - it's true - futility is a concept which is nearly impossible to define in a way that's meaningful for real clinical practice (an appendectomy for lower extremity cellulitis would be a futile therapy but conceptualizing it this way doesn't really help anyone out). Which makes me wonder why we are still talking about it as a medical community because what we're really talking about is the provision of care that a doc/medical team/whomever deems is inappropriate/highly unlikely to help/whatever. Trying to label this sort of care 'futile' helps us emotionally - declaring something futile gets us off the hook in some ways - but it's a divisive word that erases the patient's/family's values. Instead it seems we should be talking about how do we respond to requests for care that are highly unlikely to help a patient? How do we resolve those conflicts? And how do we care for ourselves as we encounter situations in which we feel like we are being asked to do patients harm by providing non-indicated and (in our opinion) needlessly burdensome care?
Pain has a study about the facial expressions of pain in demented patients (average mini-mental status exam score 16/30), concluding that yes, demented patients reliably demonstrate facial evidence of pain in response to painful stimuli. The study involved, yes, causing these demented patients pain and comparing them to healthy, age-matched controls. When I read the abstract I immediately wondered how they were able to do this study - who consented to have these demented patients subjected to pain? Per the methods:
"We took care that only patients with dementia were included in the study who still had legal capacity. After being informed in a slow and simple fashion, which was adjusted to the individual intellectual capacities, subjects gave written informed consent. We also provided instructions during testing as simple as possible and monitored the patients continuously for any signs of undue discomfort (verbally or non-verbally), in which case we stopped testing immediately. Healthy subjects were paid for participation."
One assumes, then, that the demented patients weren't even paid?
Tuesday, November 6, 2007 by Drew Rosielle MD ·
Saturday, November 3, 2007
The Business of Death
GOOD Magazine recently published a short video on the "Business of Death." The video focuses on the funeral industry in particular, not hospice or palliative care. Most of GOOD's videos and articles focuses on the impact that each of our individual choices has on the world and others when combined all together. So obviously there is a eco-friendly (or rather unfriendly) theme in the video.
The production quality of the video and animation is top notch and manages to inject some humor into a potentially dreary subject, while still educating. (Don't miss the use of Anubis the Egyptian god of the dead in the video.)
Whether or not you agree on the content, or the lack of somberness for a somber subject, you have to appreciate the potential power this 3 minute video has. It would be nice to see some palliative care topics with animation and video like this. Any Pallimed readers with some animation skills interested in putting together some instructional but fun hospice and palliative medicine videos? Email me ctsinclair @t gmail d0t com.
>>The Hospice Foundation of America has a new blog up since August 2007. The blog seems to focus on media articles and caregiver stories, and opportunities to watch HFA teleconferences. I am wondering when AAHPM and NHPCO are going to start blogs. Growthhouse blogs seem to be dormant., which is unfortunate. It would be nice to see some more palliative care related blogs.
>>A blogging medical student learns a good lesson about dying patients.
>>The National Catholic Register has a 3 part series on dying that has more tones of a conspiracy theory that hospice and palliative care is out to end people's lives. There is some misrepresentation in this article, so I am not going to bother to respond point by point, since I am tired from the Washington Post opinion piece post. In some places the author seems to say make sure you have the 'right kind' of palliative care or hospice, but does not state how to make sure it is the right one. I think most hospices and palliative care teams do a good job of meeting patients and families where they are at.
>> You were already probably aware that November is National Hospice Month, but just in case you were not aware of these other Palliative Care related awareness issues. Did you also know it is:
- National Family Caregivers Month
- National Prematurity Awareness Month
- National Lung Cancer Awareness Month
- National Pancreatic Cancer Awareness Month
- National Prostate Cancer Awareness Month
- National Alzheimer's Awareness Month
Just wanted to make sure you were aware before you made more people aware of hospice that they may be wary from being made aware.
Saturday, November 3, 2007 by Christian Sinclair ·
Thursday, November 1, 2007
Part 2 of my previous post: breast cancer prognosis, emotional well being and cancer survival, dialysis survival, don't tell mother, opioids and respiratory depression, informed assent for DNR orders, fMRIs, The Undertaking, Hinduism, comment email updates.
A couple from Cancer.
First is one on prognosis in breast cancer patients with CNS metastases. It's basically a case series of >400 patients treated at MD Anderson with breast cancer and CNS mets. Major findings: median survival after diagnosis of any metastases was 21 months; median survival after diagnosis of CNS metastases was 7 months. Nothing was significantly correlated with longer survival except younger age and estrogen receptor positivity. They do give this helpful information, however, about long-term survivors:
"Eighty-two patients (19.5%) were alive at least 18 months after diagnosis of CNS metastasis. Of these 82 patients, 25 patients (30%) had HER-2-positive breast cancer. Furthermore, 18 patients (4.2%) were alive at least 60 months after this diagnosis. The median age of these relatively longer surviving patients was 42 years. Most of these patients had tumors of the ductal histologic type, tumors classified as T1 or T2, lymph node status N0 or N1, and a metastatic status of M0 at diagnosis. Approximately 50% of these patients had ER-positive or PR-positive disease, and 73% had grade 3 disease. Forty-six percent of these patients had a single CNS metastasis."
The other is a study on survival and emotional well-being in head and neck cancer patients. The data come from prospectively gathered trial data from a couple head and neck cancer radiation studies in which quality of life and emotional well-being were collected (at baseline and throughout). Basically, emotional well-being had zero effect on survival (whereas things like age, baseline performance status, etc.) did. No power analysis is mentioned at all - one assumes it was done for the trial portion of this study but not this secondary analysis and there's definitely a concern for type-II error. How much concern? Well you can't know without the power analysis so.... The authors rhetorically frame their study as being a counter to the apparently widely held belief that one's emotional state is a predictor of outcome in cancer. I wasn't aware of this belief (other than one that cancer patients themselves have - 'gotta keep positive' - which itself is not an indication of emotional well-being) being seriously endorsed by the medical community but perhaps I'm naive. Comments?
CMAJ recently had an article about prognosis in elderly patients receiving dialysis (free fulltext here). It looks at survival in patients over 65 years old who started dialysis between 1990 and 1999 (using data from a Canadian, nationwide, voluntary database). It found that more 'very-old' patients were initiating dialysis and that survival had, overall, improved a little across the decade. Long-term survival however remains quite poor: for patients 75 or older at the time of dialysis initiation 1, 3, & 5 year survival rates were 69%, 37%, and 20% respectively (life-expectancy for a 75-79 year old initiating dialysis was estimated to be ~3 years).
A quote from the accompanying editorial:
"Optimal provision of renal replacement therapy continues to present formidable challenges to patients, family members, health care professionals and policy makers. To date, most of the large trials including patients with end-stage renal disease have focused on "hard" outcomes like death and cardiovascular disease, and the results have been disappointingly neutral. Patient-perceived quality of life has rarely been used as a primary consideration. This is surprising, especially when one considers the financial costs of renal replacement therapy and the ambivalence felt by many patients who are considering these therapies."
Supportive Care in Cancer presents further observational data that respiratory depression is rare during opioid titration. The current study echoes the previous one I blogged about except that this time the patients were receiving intravenous hydromorphone for dyspnea. It involved 14 advanced cancer patients (mean survival 20 days) admitted to a palliative unit with moderate to severe dyspnea for whom opioid therapy was being started (patients with COPD were, unfortunately, excluded). Findings: at 120 minutes dyspnea improved, respiratory rate decreased (39 to 29/minutes), and O2 sat and pCO2 (transcutaneous measurements were used) didn't significantly change. While this is swell, and supports the observation that opioids palliate dyspnea at non-respiratory depressing doses, it doesn't help answer the more urgent question of what happens with patients at high risk of respiratory complications of opioids (i.e. people with advanced COPD and who retain CO2 at baseline, those using other CNS depressing meds, etc....). The COPD literature on this has also demonstrated the safety and efficacy of opioids for dyspnea in a handful of small trials but have avoided studying the patient population we're most worried about - those who retain CO2. If opioids are shown to be safe - great, and maybe they will be used more appropriately for high risk patients with refractory symptoms - but even if they're shown to actually increase pCO2 in high risk patients that doesn't mean they're inappropriate to use - it just (at least for me) helps to better define the risk.
JCO has an Art of Oncology piece about requests from families not to give bad news to a patient. It's a practical primer on the topic - one which I know gives many clinicians belly pain (I am constantly asked by housestaff what to say when the family stops you in the hall and asks you not to tell the patient what's going on). I particularly appreciated the first words in its section on responding to such requests: Do Not Over-React. Which reminded me of this.
Chest has a point - counterpoint - rebuttal series on 'informed assent' (not consent) for DNR orders in the ICU. The 'point' is a proposal that physicians, when they strongly feel that CPR is not indicated for a critically ill patient, basically ask for assent from families for a DNR order and not ask for consent. The difference being in the first the physician explains the situation, recommends a DNR order, and then asks the family if it's ok with them that she or he makes that decision vs. asking the family what they'd want, or if they'd agree to a DNR order. (The distinction is real, although it can be subtle, and the article would have been greatly strengthened by providing examples of actual language.) The background to this, which the authors frame, is that many family members feel the 'tyranny of autonomy' when they are asked to make what feels like life & death decisions and may be reluctant to actively endorse treatment limitations because it feels like they're endorsing 'letting the patient die' (even if, medically speaking, the patient is dying anyway). So, if the physician offers to take over/take the responsibility for the decision (with the family's assent), it can be emotionally easier on the family. The counterpoint is pretty interesting, but one has the sense from it that the author feels, in fact, that patients/families have a right to receive medical care even if no one else thinks it's indicated.
Continuing to track the fMRI & prolonged states of unconsciousness thread running through the recent scientific and popular literature...a recent New Yorker had an article by Jerome Groopman about this. It's less philosophically minded that the Salon piece I wrote about earlier. My sense is that in the not too distant future this and similar technologies are going to be widely clinically available, we may or may not however know what to do with the data, but it's going to make decision-making that much more complicated for us and grieving families, so we'd best be ready.
After having watched it, I would definitely mention the PBS show about Thomas Lynch, 'The Undertaking.' There's a transcript of an interview of a couple who were featured in the documentary (who's son died of a rare genetic disorder) which is worth a read:
"A lot of our friends or family, even if they weren't uncomfortable, were just inexperienced. So it was hard. We were all fumbling through it, and when you're talking about a child dying, it just seems wrong. So people feel more comfortable remaining hopeful: "Oh, well, he just might get better," or, "Maybe this new medicine will work," or, "Maybe when he turns two," or "There's always this hopeful future." And we would a lot of time have to speak that way with other people and then come home and feel different, feel like that's really what wasn't going on. So in that it felt lonely."
I've mentioned before on the blog my discomfort with hope-talk ("you're either a survivor or nothing") and so I was particularly struck by their mention of the isolating aspects of it. (In the interview a major theme that this couple brought up was that what they really liked about hospice was the simple fact that they could talk with someone about what is actually happening.)
The Journal of Pain has a review on pain and suffering in Hinduism and potential implications for pain management.
Finally, Blogger has added an enhancement to the comments. You can subscribe (via email - Google account required unfortunately) to a post's comments so that you can automatically be updated if someone has commented on a post you're interested in or have yourself commented on. (Click on the 'Email follow-up comments to...' box in the comments page.)
Thursday, November 1, 2007 by Drew Rosielle MD ·