Sunday, February 28, 2010
The Philadelphia Inquirer enters our national end-of-life conversation this weekend with a tour-de-force that accurately portrays the reality of life and death in the American healthcare system as well as the potential of palliative care. The article describes the experiences of Mary Tole, a 74 year-old woman who spent 67 days in the hospital at Abington Memorial Hospital last fall (10 in the ICU and 57 on a ward). The palliative care team's crucial interactions with the patient and her family are detailed.
Mrs. Tole was admitted originally with delirium and falls. She had been previously healthy. After an extensive workup, no cause could be found and her condition worsened. Six weeks after admission, a palliative care consult was obtained and FINALLY someone (Dr. Diane Dietzen, Palliative Care Medical Director and team) sits down with the patient's family to review her situation. The patient's brothers are nervous before the meeting. Is this finally the "death panel"? Is the hospital going to make them pull the plug?
But if you're in this field, you know what ensues: as a result of the family meeting, the family becomes better informed, has a chance to "vent", and seems to feel well supported. They even wonder, well, why didn't we receive this opportunity earlier?
The article heavily quotes Dr. Sean Morrison, guru from CAPC and the National Palliative Care Research Center.
But the best part?
The patient is still alive today, and achieved her goal of returning home. The palliative care team remained involved in her care as she slowly improved and until the time of discharge from the hospital. While certainly a significant proportion of palliative care patients die within a short time after PC becomes involved, it remains vitally important to reassure people that this is not because of palliative care and that PC practitioners are very interested in supporting patient autonomy when it's feasible (or supporting substituted judgment when patients aren't able to tell us what they want).
The fiscal side of the patient's care was also detailed:
- Total hospital charges were $775,636.70 ($95,092.71 reimbursed by Medicare Advantage Plan)
- Medication charges alone were more than $180,000
- Physicians billed for about $60,000 in fees ($10,900 reimbursed)
- Reimbursement for the palliative care services? $854.90 (13 visits)
After all of this, Mrs. Tole has finally completed an advance directive which states her wish to be DNR and names her daughter as her surrogate.
In a much more melodramatic manner, Keith Olbermann recently delivered a diatribe about his father's illness (laced with angry reprimands for those who might wish to derail health care reform). His father has been hospitalized for several months and has a chronic critical illness. You can watch the video, but in essence, Olbermann describes his father pleading for help and then subsequently asking for Olbermann to kill him because of the amount of suffering he is going through (trach, PEG, chest tubes, dialysis, etc, etc). Olbermann approaches the surgery resident to ask if they can sedate his father, and the resident complies. At the time of recording, he was no longer sedated but comatose and septic.
Olbermann goes on to talk about how lucky he was to be able to have significant conversations about his father's wishes beforehand. He has some choice words for those who don't want to reimburse physician-patient end-of-life conversations (ie the provision to reimburse ONE advance care planning conversation every FIVE years).
I thank Olbermann for his poignant description of his father's struggles, his enthusiasm for advance care planning, and I wish his father and family the "relief and/or release" that his father rightfully demands. But is advance care planning really the issue here? ACP often has a limited impact on what actually happens once someone becomes ill. Olbermann seems to suggest that he had those tough talks with his father before his current illness, and it sounds like his father still retained at least some capacity to make decisions up until very recently anyway. Yet his father still wound up having interminable suffering.
I look at advance care planning as sorta like an immunization. If you give 100,000 people the flu shot, some will be protected from having any symptoms of the flu, many will still get mild symptoms, and some will still have a severe case of the flu inspite of the shot. What does advance care planning immunize people against? Hopefully, unwanted intervention in the face of a poor prognosis, for one. But more importantly, it probably immunizes loved ones against "second guessing" or "thirtieth guessing" (as Olbermann puts it). It's not going to stop the second guessing altogether, though. Second guessing is part of any difficult decision, especially important decisions that you rarely make. ACP seems most helpful to me in those circumstances when the patient's poor prognosis is REALLY clear (either they are very likely to die soon regardless of what is done or they aren't likely to recover some important function, like severe anoxic brain injury). Patients who have completed living wills usually have those types of circumstances in mind when they completed the documents. But oh, the paths that you can take to reach your death and how often the prognosis (and even diagnosis) remains unclear up until death or resolution of the illness! (As in Mrs. Tole's case.) ACP seems much less helpful in those circumstances, and leaves more room for "thirtieth guessing."
So here's the "care pathway" that needs to change:
1) Man gets really sick, goes through torturing procedure after procedure.
2) Man gets to the point where he can't take it anymore.
3) Man pleads with his son (presumably before his doctors?) to RELIEVE and RELEASE!
4) His son thinks the man's docs will look askance on this request (indicating that the doctors have never had a goals of care conversation with the son previously).
5) Only at that point does any communication seem to occur about relief of suffering and the possibility that life-prolongation should no longer be the goal.
In other words, just as when someone requires intensive care for the flu in spite of an immunization, when the living will or previous discussions don't necessarily apply to the present serious illness (or ACP hasn't taken place), you need someone who can provide intensive communication care: someone who can get to the bottom of how the illness fits into the patient's life-narrative and someone that can blend this narrative with the medical narrative in a way that makes sense to the patient's family.
As discussed previously on Pallimed, the current Medicare reimbursement scheme DOES reimburse physicians to have these difficult conversations. You can bill for time spent counseling, and there's no limit to the number of these sessions. Why don't they happen?
1) Inadequate training of most physicians to conduct these types of conversations.
2) Disproportionate reimbursement for procedures compared to "cognitive-based" tasks.
3) Inadequate availability and utilization of palliative care teams.
As Mrs. Tole's case suggests, our country would have nothing to lose if healthcare reform (in whatever form it takes) ameliorates all of the above concerns.
Sunday, February 28, 2010 by Lyle Fettig ·
Thursday, February 25, 2010
But with the growth of induced hypothermia protocols in resuscitation efforts, palliative care teams are likely to be seeing Demerol to be used as a medication to prevent shivering.
So what is a palliative care team to do? We don't want a patient to shiver! Shivering is a symptom and an unpleasant one at that. And we want control symptoms, right? Shivering, oddly enough is not in the index of the 4th ed of the Oxford Textbook of Medicine. (Hint: If anyone needs me to write a chapter/pamphlet on shivering for the next edition I will!)
But we know Demerol is likely to cause delirium, myoclonus and seizures, especially in renal patients. And your induced hypothermia patient may be likely to have renal failure. So why do we even use Demerol for shivering?
I asked a lot of people in the hospital and no one had a decent explanation besides some versions of :
Treatment of shivering and the larger reduction of extreme vasoconstriction and sympathetic nervous system activation caused by induced hypothermia has been well studied...mostly in animal models. The reason for shivering is basically a thermoregulatory defense taht needs to be attenuated. And demerol reduces the shivering threshold, allowing patients to tolerate lower temps without shivering.
So what we do know about meperidine? It is active at the mu and kappa opioid receptors and is anticholinergic. Different articles cite the anti-shivering effect to be at either the mu-opioid, kappa-opioid or the alpha2-adrenorecptor (anti-cholinergic). So frankly we do not know how Demerol reduces anti-shivering, but we do have studies in healthy volunteers and anecdotal evidence to suggest it has a role in anti-shivering.
I hate to say more study is needed, and I REALLY don't want to say there is a paucity of data, but now at least we can all talk a little more intellectually about the drug choice for hypothermia protocols when palliative care is consulted. Maybe I should ask Drew if I can write a Palliative Care Aspects of Hypothermia Protocols EPERC Fast Fact.
And does anyone know the Latin (read Fancy Medical Term) for shivering?
Doufas, A. (2003). Dexmedetomidine and Meperidine Additively Reduce the Shivering Threshold in Humans Stroke, 34 (5), 1218-1223 DOI: 10.1161/01.STR.0000068787.76670.A4
Thursday, February 25, 2010 by Christian Sinclair ·
This is the companion piece to Handy Hints for a National Meeting 2010. I always try to learn something about presentation skills from any talk I go to. If you have any of your pet peeves from presentations or helpful comments please add them below. You may also be interested in the list of key presentation software and websites.
Despite the frequent use of PowerPoint few people have ever been trained on how to use it effectively as part of a toolkit for presenting information. It is a tool to convey your message, much like a white board, a laser pointer, a flip chart, your verbal tone, your appearance, a video, the orientation of the audience to the speaker, etc.
PowerPoint can become a crutch which drags your presentation down instead of augmenting your speech. Getting caught up in all the ‘neat’ things PowerPoint can do does not always help in getting the message to your intended audience.
Many people put too much information on their slide. The only time to fill up a slide with scores of words is to demonstrate there is too much out there. If you put your whole talk on the slide, your audience will read it quicker then you can say it, and become bored quickly. Your slides should never be able to stand alone without you presenting. Otherwise, why are you even there? So to make sure you make the points and not your slides, try to implement the 5-5-5 rule:
• No more than 5 words in your title for each slide
• No more than 5 bullet points on each slide
• No more than 5 words per line
With this rule you get a clean efficient look to your slides, enough reminders for the areas you want to talk about, and you become the focus of your presentation. There are times when you need to break it but in general it will lessen your dependence on the slides. If you NEED all those words on the PowerPoint slide and can’t slim it down, consider more practice giving talks WITHOUT the addition of PowerPoint.
Spellcheck is our friend, but please hand check the spelling after your computer does it for you. Eye now these form personnel experience.
No fancy fonts please, stick to the basics. There is no general consensus on which one is best, but make sure the fonts are legible from far away. Size of the font is important for your audience with poor eyesight.
Be consistent with your color scheme, and choose from a limited palette. Avoid red and green in the same slide for those members of your audience that are color blind.
Fancy backgrounds may seem creative but do not let them distract from your talk. Other common distractions are animated text (NO!), sound effects (double NO!). Include your logo on ONLY the first and last slide; a logo on every slide feels like an advertisement. Aim to be such a memorable speaker, people talk about you AND your institution.
When giving your talk, try working with a remote control to advance the slides. If you give many presentations this should already be in your possession as it allows you the freedom to move away from your computer and engage your audience. You may also consider pressing “B” during your presentation to turn the screen black to get more involved with your audience or to place the focus back on you.
Consider consolidating all of the information from your talk into a Word document instead of just sending the PowerPoint slides to be your handout. It may save several trees if we all did this. Or even better post your talk to Slideshare or Scribd so more people can benefit.
In a medical talk remember to indicate if the medication and the indication are FDA approved or not. You signed the agreement saying you would disclose, so you better. Try FDA@Drugs or the medication insert. For hospice and palliative medicine, you should buy the Hospice and Palliative Care Formulary (HPCF-USA) for this info at quick reference. You may be surprised how many medicines are not FDA approved for HPM indications.
Find some good presentation websites like Six Minutes or TED talks. You don't have to go buy a book, although I would suggest Presentation Zen or Slide:ology if you are interested.
Other quick tips on presenting:
* Start on time. Respect the people who got there to hear you speak.
* End on time. Respect the people who are still there at the end of your talk.
* Don’t cram a lot of data/graphs on one slide. The audience can’t read it.
* Consider making your own graph to highlight the important part as opposed to the journal provided version.
* Repeat every question you are asked, because the whole audience likely missed some/all of it.
* Thank people who asked the question, even if it was a dumb/condescending/off-topic question. Your audience will admire your graciousness and know the questioner is an imbecile without you implying so.
* Don't take too long to answer the question. If you are covering it later, say so. If the answer will take a lot of time, give a short answer and ask those who are interested in the long answer to meet after the talk.
* If you are done presenting and you encounter the ‘know-it-all’ who wants all of your time, make sure to set limits, and let others ask you questions.
* Bring your power cord for your computer.
* Email your talk. Have it on a jump drive. And on your hard drive. And on the internet somewhere. Never be too cautious.
* Don't change your slides from the handout whenever possible.
* If the slides presented are different from the slides in the handout, mark the title of the slide with an asterisk to remind you to inform your audience.
* Turn off all unneeded programs on your laptop. IM, website alerts, weather alerts, CITRIX prompts, etc.
* Give credit to others who helped prepare your talk, especially if they are there.
* Put your contact information on the last slide if you would like people to contact you about your topic.
* If you are a presenter at this meeting or anywhere, take note of how other presenters are effective or ineffective. Think of how you may incorporate/avoid their style in any of your future talks.
* Don't forget to rehearse. Please rehearse and have some one give you honest feedback
Some poster tips:
* If you are doing a poster, keep it clean and simple -- put your take home message at the top, use large enough font, break things up with graphics.
* Have copies of the poster and/or related/expanded material available in handouts.
* If you have a poster session, unless it's an absurdly interminable length of time, stay with your poster. There are people who want to talk to you about your study, and if you did your poster right, it's only going to give highlights. You're there to give the details and answer questions.
but it gets you most of the way there!
And lastly a quick presentation on how NOT to give a presentation.
How to Give a Great Presentation is archived online at www.pallimed.org
Requests for use/modification should be directed to email@example.com
by Christian Sinclair ·
Here is a list of tools and sites I frequently use to make my presentations or might inspire you to stretch beyond your boundaries and increase your skill set. Check out the companion piece How to Give a Great Medical Presentation 2010.
- Duarte Blog: Nancy Duarte, writer of the book Slide:ology, who helped create the look (not the data) for An Inconceivable Truth. Great tips about slides and hot to make your talk memorable.
- Six Minutes: Blog with links and best of features from all the best public speaking blogs. Covers preparing, making slides, and presenting. ****Highly rec: Weekly Best of Blogosphere.****
- Presentation Zen: The Art of the Slide. Lots of ideas for making your talk inspiring and memorable.
- Slideshare: You can store your presentation files for public or private use. PPT, DOC, PDF, whatever. You can even add mp3/audio and make a SlideCast. Good site to also check if other people have posted on your topic. See my presentations on Slideshare. I also post my handouts here. You can then give your audience the links to your account or the talk so they can always look it up wherever they are.
- Scribd: Similar to Slideshare but focused more on documents. Just pick one, not both.
- YouTube: You would be surprised how many presentations are on here. Not just some 3 year old explaining the plot of Star Wars. Also good to find entertaining things tangential to your talk that you could pull in to your talk.
Tools (Web-based or Mac and PC):
- PowerPoint: Duh.
- Delicious: A bookmarking service that is independent of any computer you are on. So when I prepare for a talk, I can add any website that may be relevant to my Delicious account, tag it with labels, and then it is easily searchable (public or private, you choose.) Check out my account for ideas on how I use it. Also a good search engine to see what people are linking too.
- Twitter: I use it to search for keywords for my talk to see what others are saying about it. Try it necxt time and you may find some things that get included in your talk.
- Screenr: A web-based, free tool that records your screen. Great for explaining a website or 'how-to.'
- Prezi: A cool new idea in making presentations that makes kinetic typography more accessible. I have been playing around with this and I am just waiting for the right talk to use it on. Animoto is another site that offers similar features.
Tools (PC only):
- MWSnap: (Free) Clipping software to make a jpg of anything on your computer screen. ****Highly recommended****
Tools (Mac Only):
- Keynote: Duh.
- Graph Click: A cool program which helps you transform that dusty old graph from the 1982 article that has been copied a million times into something legible and that fits with your theme. You can basically grab all the datapoints from a graph with a few clicks. Clever.
- Flickr: Great site to find Creative Commons licensed photographs on ANY subject you could think of. 32k+ images tagged with 'hospice'!! Make sure you use advanced search and check the appropriate Creative Commons boxes at the bottom. Maybe even leave a comment for the creator of the photo. And give them credit in your talk.
- Compfight: A website which does a better job searching Flickr. Frankly it is just fun to look at ll the amazing photos.
Anything you would add to this list?
by Christian Sinclair ·
Sunday, February 21, 2010
A few analyses from the Coping With Cancer Study have been published recently, all in the Journal of Clinical Oncology. We've published extensively about the CWCS (see here for more). Briefly, it was a prospective, US multi-institutional study of several hundred advanced cancer patients (& their family caregivers) which measured at baseline, among many things, characteristics of patient coping, communication with clinicians, and care preferences. Patients were followed through death, and caregivers were followed into bereavement.
First is a look at race and predictors of 'intensity' of care at the end of life. This analysis looks at ~70 African American patients and ~230 white patients (essentially all the patients who had died by the time of the analysis who self-reported those racial categories). AA patients were more likely to report wanting (37% vs 22%), and to actually receiving (13% vs 3%) 'intensive' EOL care (receiving intensive EOL care was defined in the study as dying in an ICU after either CPR or mechanical ventilation). Rates of reporting having an EOL discussion with a physician, as well as trust in their physician, were similar between white and AA patients, wheras positive religious coping was more common in AA patients than whites.
In multivariate analysis, religious coping was strongly associated with receiving intensive EOL care in white patients (see also here for another CWC paper on religious coping), but not for AA patients (this is probably because the AA patients were more uniformly positive religious copers than white patients that there just weren't enough to capture measurable differences). In addition, having a preference for intensive EOL care was strongly associated in white patients with actually receiving it; for AA patients there was a not-statistically-significant trend towards this (adjusted OR 4.5, p=.058 compared to an aOR of13 for white patients). That is - white patients were more likely to get what they wanted (at least as measured by self-reported preferences at baseline) than AA patients.
A few thoughts about this. Overall this is very consistent with prior research about racial and cultural differences in EOL care. It's always important to keep in mind however that while these differences are there, and measurable, and reproducible, the groups are more similar than they are different (e.g. vast majority of patients did not receive intensive care at EOL, majorities in both groups reported quality of life/symptoms were more important overall than absolute length of life, etc.). This reality, and the fact that you can never assume what the patient in front of you wants until you ask, should always be kept in the forefront clinically.
What's most interesting about these findings is the disconnect between baseline preferences and actual EOL care in AA patients (at least relative to the white patients). The authors hypothesize that, at least regarding those patients who report at baseline wanting intensive EOL care, AA patients' preferences are more fluid and situation-contingent (e.g. change more readily as death approaches) than white patients who endorse similar goals at baseline. Of course another explanation (which is also discussed) is that AA patients' wishes are not respected to the extent of white patients' at life's end (and in fact having a DNR order at baseline did not seem to be 'protective' from intensive EOL care for AA, as it did with whites). For both groups (the DNR-at-baseline and the preference-for-intensive-EOL-care-at-baseline) the disconnect between patients' wishes and what actually happens is more pronounced in AA patients than white patients. That's disturbing, and worth more investigation.
Second is a look at which patients receive care at the end of life which is consistent with their stated preferences. This analysis looked at baseline patient preferences (for symptom-directed care preferentially over life-extending care or vice versa), actual care received in the last week of life, whether patients reported an EOL conversation with their physicians, and how bereaved family caregivers rated physical and psychological distress in the last week of life.
There are a lot of findings here, and I'll only mention a couple. First is that they note that baseline preferences for life-prolonging care or actual receipt of life-prolonging care in the last week of life were not associated with actually living longer (survival was ~200 days from enrollment in patients preferring symptom relief, and ~160 days for those preferring life prolongation; there were similar findings in patients who actually received life-prolonging care in the last week of life - none of the differences were statistically significant). They defined life-prolonging care in the last week as chemotherapy, tube feeding, or any 'ICU-level' of care. This is reminiscent of the SUPPORT study sub-analysis of cancer patients - preference or receipt of more 'intensive' care at the EOL was not actually associated with living longer.
As far as patients receiving care that was consistent with their baseline wishes, reporting having an EOL conversation with their physician was the only factor consistently associated with this congruence. Regardless of baseline preferences, those patients who received life prolonging care in their last week of life (as defined above) had more physicial and psychological distress in the last week (as reported by family caregivers). So, even for patients who said (at baseline) they preferred life prolonging treatment, receipt of such treatment was associated with more suffering, and lower rated quality of life (compared to patients who didn't receive those treatments, regardless of preference).
I've ruminated at length before about prior CWC findings (showing that having an EOL discussion was associated with improved EOL care/outcomes) - about whether it was the impact of the discussion itself vs. 'there's something different about patients who have these discussions' which leads to the differences in EOL care/outcomes. While this study can't answer that question, to an extent these findings suggest that 'patient protoplasm' is not the major determinant, as even those patients who preferred symptom-control over life-prolongation but received life-prolongation, did poorly. Ie - it's more than a simple phenenomon of those patients who are more comfortable with death/dying/& talking about it 'doing well' through the end. If you ascribe causality to these findings (which should be done cautiously of course) then it seems like we can actively hurt our patients (increase suffering) by the treatments we give them as they die. This is not news of course.....
The final one looks at the impact of spiritual care by medical teams on patient's end of life care. In some ways it is a follow-up to this CWC analysis Tom reported on a year ago. This study looks at patient reports of spiritual support from their medical team, and pastoral care utilization, and finds that those are associated with more hospice utilization, and less aggressive EOL care, even among religious copers.
Loggers, E., Maciejewski, P., Paulk, E., DeSanto-Madeya, S., Nilsson, M., Viswanath, K., Wright, A., Balboni, T., Temel, J., Stieglitz, H., Block, S., Prigerson, H. (2009). Racial Differences in Predictors of Intensive End-of-Life Care in Patients With Advanced Cancer Journal of Clinical Oncology, 27 (33), 5559-5564 DOI: 10.1200/JCO.2009.22.4733
Mack, J., Weeks, J., Wright, A., Block, S., Prigerson, H. (2010). End-of-Life Discussions, Goal Attainment, and Distress at the End of Life: Predictors and Outcomes of Receipt of Care Consistent With Preferences Journal of Clinical Oncology DOI: 10.1200/JCO.2009.25.4672
Balboni, T., Paulk, M., Balboni, M., Phelps, A., Loggers, E., Wright, A., Block, S., Lewis, E., Peteet, J., Prigerson, H. (2009). Provision of Spiritual Care to Patients With Advanced Cancer: Associations With Medical Care and Quality of Life Near Death Journal of Clinical Oncology, 28 (3), 445-452 DOI: 10.1200/JCO.2009.24.8005
Sunday, February 21, 2010 by Drew Rosielle MD ·
NEJM has an editorial discussing withholding information from patients. It's a practical, casual discussion of 1) the fact that in real life we withhold information from patients all the time (e.g. don't go into all the details as they can be confusing, overwhelming, or superfluous), and 2) the fact that we decide all the time to withhold certain major pieces information out of a desire to protect the patient emotionally. It's the latter that is the real issue (e.g. not talking with a leukemic patient about their abnormal MCV is not a problem; withholding from them their relapse is), and this is a reasoned discussion of those issues. The last couple months one of my fellows and I have started to use the phrase 'two-thirds of the truth' in discussing at times what we've told patients. Generally we mean by this we've discussed the Big Bit of Information, but made a conscious decision (based on our own 'limbic sense' of what the patient is capable of hearing/taking in/etc. or on the patient's own requests for limited information) not to disclose further details or more information (for the time being, even if it's just a day). For example, telling a patient that the cancer is continuing to grow and that there's no further anti-cancer treatment available, but stopping short of talking specifically about death, or disclosing a time-based prognosis, etc. I'm curious as to how others conceptualize this, including the routine day-to-day decisions about what and when to tell patients and when to stop telling them. Sometimes you can just ask patients if they wish to talk further, do they want to talk now about XY&Z, etc. but sometimes (speaking personally) I conclude at the bedside that now is not the time without any specific verbal instructions from the patient. These decisions to withhold now are different from decisions to always withhold (or at least never offer to discuss) that remaining 'third.' How much time you think the patient has, or how quickly decisions need to be made that are contingent on the patient knowing what's really happening, clearly impact these decisions of course. I should probably not hope there is a more organized approach to this (ie, one that people use to teach palliative fellows) but if anyone has one let us know in the comments.
Related to this (almost uncannily so), JCO has a discussion of honesty, pessimism, and 'hope' in talking with cancer patients. It starts with this scenario, and then unpacks all the issues raised by this:
Dee Jones is 35 years old, married, and the mother of three children, all younger than15 years of age. She had been healthy all of her life before she presented with a 2-week history of abdominal discomfort and anorexia. Evaluation revealed moderate jaundice, an enlarged liver, and abnormal liver function tests. An image of the abdomen showed a pancreatic mass and widespread metastatic disease to the liver. A liver biopsy confirmed a diagnosis of metastatic pancreatic carcinoma. She received first-line chemotherapy for pancreatic cancer and returned 6 weeks later for re-evaluation. She had evidence of disease progression, increasing pain, weight loss, and was bedridden more than 50% of her waking hours.It's an excellent discussion. The one thing they don't mention specifically is the big teaching point related to 'making' the patient and her husband cry. This is a common concern amongst housestaff and oncology fellows and something I am constantly addressing: that someone crying because of something you've told them is not a bad thing. Learning you're dying from your cancer and there aren't any realistic ways to treat the cancer anymore - that's something to cry about, that's a normal, healthy, human response to that information and not anything 'bad' that you the clinician has done. We have to be vigilant that we don't worsen the situation for the patient (by being confusing, by not giving them enough time to process, by ignoring their emotions, etc.) of course. One of the best pieces of wisdom given to me when I was training by my teachers was: You can't shine shit.
A staff oncologist, accompanied by a first-year oncology fellow, visited with the patient. With the patient acknowledging that she wanted to hear prognostic information, the medical oncologist had a heart-to-heart discussion with the patient. The senior oncologist noted that survival is typically measured in weeks. They discussed treatment options ranging from additional chemotherapy to participation in an early-phase clinical trial. They talked about symptom management and hospice care. They agreed that no further cytotoxic chemotherapy would be used. The conversation was difficult for all: the patient and her husband cried and the oncologist was visibly moved.
After leaving the room, the staff oncologist and fellow discussed the consultation. The fellow asked the oncologist why he was so pessimistic when talking with the patient. Why did he say things to make the patient and her husband cry? Shouldn't he have given the patient more hope? Would it not have been better for the patient to hear this dire news in chunks over the course of several clinic visits? After all, the patient was so young she may just beat the odds.
Epstein RM, Korones DN, & Quill TE (2010). Withholding information from patients--when less is more. The New England journal of medicine, 362 (5), 380-1 PMID: 20130252
Schapira, L., Butow, P., Brown, R., & Boyle, F. (2009). Pessimism Is No Poison Journal of Clinical Oncology, 28 (4), 705-707 DOI: 10.1200/JCO.2009.25.0027
by Drew Rosielle MD ·
* If you are bringing family or a significant other, spend some time with them.
* Bring business cards, lots of them. Make sure they have your email on them. If they don’t, write your email a number of the cards so when you hand them out, you are not trying to find a pen to add it.
* When receiving a business card, immediately write down the topic of interest you were discussing with that person. If the time isn't right, then do it soon afterwards. When you get home, you will have met so many people, you won't remember who that person was. Opportunity lost.
* If you get someone's business card, and you don't care if you ever interact with them again, make a special symbol that only you know on it, so you know to throw it out when you start going through all the business cards. Not everyone you meet is going to be a hub of a network you need.
* Turn in session evaluations in a timely manner. And give some valuable feedback. Bad speakers need to know they are bad and why and what to improve. Don't give them a 4 out of 5!
* Find someone who is organizing the event and let them know they are doing an excellent job. They don't hear it enough. They are probably pretty exhausted from putting out everybody's "EMERGENCY!" They have put in a lot of hard work and seldom get recognized.
* Also find the conference chairs and thank them. While likely celebrities in the field, they don't always get personal recognition for the months of work put into coordinating the activity.
* Reconnect with old friends.
* Try and get out and see the city you are in, since you never know when you will be back there or if it will be devastated by a major hurricane or flood or earthquake or killer tomato.
* Wear comfortable shoes, you will be doing a LOT of walking!
* Ask other attendees what talks they are going to or avoiding. You may find something interesting you had previously overlooked.
* Bring your CV (multiple copies, and UPDATED), regardless of whether you are looking for a job. Many people may want to know more about you for networking reasons, not just job offers.
* Don't sit by yourself unless you are the first person in the room.
* Talk to people.
* Sit next to someone and then introduce yourself.
* Don't stay in your hotel room too much, you'll miss too many opportunities
* Stay in your hotel room sometimes. Take some time to unwind and be yourself.
* There is usually a bulletin board in a central place where people post messages: Look there for any messages regarding you or get-togethers you are interested in.
* When you go out with other people, you do not HAVE to talk about your field. (The people at the table next to you may appreciate that).
* You should make lunch/dinner plans with people outside the group you came with, but invite your group along too, if appropriate.
* Connect with attendees before you go through social networks like Facebook, LinkedIn or Twitter.
* Use the business cards you collected during the meeting to see if anyone is on LinkedIn. This makes it easy to get their latest contact info and you can toss the card since you have an updated digital version.
* If you contact someone on a social network after the conference, be kind and add a little note about why you are connecting with them. They likely met a lot of people and may not remember you. And with your notes you wrote on the business card (see first section), you look like you have a super memory!
* See if people are Twittering about your conference on search.twitter.com
* Know the hashtag for the conference and use it in your tweets.
* Put something colorful or interesting but not too noticeable on your name badge. People will ask you about it and then you can tell them what it signifies. Note: Do not say, “It signifies something to get people to talk to me.” Although that would be pretty funny.
* Try to ask a question in at least one session that strongly interests you.
* When you ask a question, first thank the speaker, introduce who you are, and where you are from (quickly). This helps calm you down if you are nervous to ask your question. It also lets the audience know if they want to talk to YOU after the session if they have similar interests.
* Don't hog the mic. Ask your question succinctly. Other people have questions too.
* When you come back to work, schedule an educational session with interested parties to share everything you learned there. Your business may let you go to the next conference if you educate others.
* Don't just depend on your notes during each session; chances are you will never look at them again. Write down key facts you have learned towards the end of the day.
* Pick a method to highlight key facts or notes. Tag good notes with a star or different color pen while you are taking them. When you get back it will make it much easier to find the 'GREAT' ideas or 'ACTIONABLE' plans. Or you can Tweet the really good ones too.
* Go to the poster sessions and talk to the people who made the posters. A lot of hard work went into most of these, and everyone likes to hear when they have done a job well.
* Go to at least one paper session. The concurrent sessions are great but you can find out some interesting up and coming things in the paper sessions.
* Don't be afraid to introduce yourself to any of the 'celebrities' in the field. Most of the well-known people are very friendly and willing to talk, just make sure they are not in a rush for somewhere else. If you don't read the situation right, they will cut the interaction short, and you will think they are a big jerk. Remember, a lot of people would like to have their attention.
* After a session, if you talk with a speaker, make your point or ask your question, and then allow others to interact. Nothing is worse than the know-it-all who wants to take up all the time of the presenter without regards to other people's interest.
* If you don't like a session, leave. Make the most of your time at a conference.
If you have any other tips, please email me at firstname.lastname@example.org
Handy Hints for a National Meeting is archived online at www.pallimed.org
Requests for use/modification should be directed to email@example.com
by Christian Sinclair ·
I am mailing out the Pallimed Street team kits in time for the AAHPM/HPNA Annual Assembly on Tuesday, so if you want to help out let me know soon by shooting me an email at firstname.lastname@example.org. Right now we have over 20 people who have volunteered to hand out Pallimed 'P' Stickers at the assembly to wear on your name badge.
In case you forgot what the kit includes:
- A set of 20 Pallimed 'P' Stickers
- A set of 20 Pallimed business cards
- 2 5x7" mini posters
- A Pallimed Prize Pledge sheet
- A special treat for you (non-edible)
by Christian Sinclair ·
Monday, February 15, 2010
In 2009, the Annual Assembly of the American Academy of Hospice and Palliative Medicine (AAHPM) and the Hospice and Palliative Nurses Association (HPNA) became the first demonstration of multi-user use of Twitter at a major medical conference. Part of this was a nice coincidence of events: Twitter was growing in popularity in early 2009, I had just become more comfortable with Twitter after a few months of use, smartphone apps for Twitter became more powerful allowing for non desktop use of the platform.
Some basic stats from 2009's AAHPM/HPNA Annual Assembly:
- Tweets During the Conference (Tue 3/24-Sat 3/28 using #AAHPM tag): 224
- Unique users tagging Tweets with #AAHPM: 30
- Average number of followers: 220
- Median number of followers: 70
- Minimum number of followers: 5
- Maximum number of followers: 1,424
- Total number of followers for the 30 Tweeple: 6,621 (not checked for redundancy)
Hopefully this year we can surpass those numbers as we hopefully have more people familiar with Twitter. To help boost those numbers and spread the word of the good information on hospice and palliative medicine I hope you will join the effort.
So if you:
1. Own a smartphone or laptop with wi-fi AND
2. Are coming to the AAHPM/HPNA Annual Assembly (or wish you could) AND
3. Care about hospice and palliative medicine issues
Then you should be tweeting at the conference.
With over 2000 people in attendance if even 10% of us could be tweeting about this we could make a big impact and create an ongoing network of HPM twitter users and become leaders in communication beyond the bedside.
So this is what you need to do soon so you can start building your Twitter network (if you don't have an account yet or only your brother-in-law is following you). First:
Read the previous post on Twitter for Health Care Professionals.
Read the post on lessons learned from the previous Assembly.
1. Post a tweet using the hashtag (#) of #AAHPM so that other people going can start finding and following you (forming a network of attendees). Example: "I am excited to meet a lot of my friends at the #AAHPM Annual Assembly next month"
2. Follow my Twitter list of 2010 AAHPM/HPNA Attendees (I will continue to update this list through the conference) and my Twitter list of A-list Tweeters in HPM
3. Feel free to follow the other HPM related Twitter lists in the right hand column of my profile.
4. Try to grow your number of followers by searching interests outside HPM so that you start to be bridge between different networks (say Red Sox fans and HPM or Cheese Lovers and HPM)
5. Post interesting thoughts about HPM leading up to the conference. (Avoid tweeting about patient issues: "I just made someone a DNR!" Bad form and legally dumb)
6. Tweet from your phone and your computer to get use to using both
At the conference
1. Save the search term #AAHPM so that it is easy for you to find other people tweeting from the conference
2. Don't forget to add #AAHPM to every conference related tweet
2a. If using a computer with wi-fi then use a web based program like TweetChat to automatically add #AAHPM to every tweet.
3. If you don't like tweeting during a talk, write down interesting things to tweet about and tweet at night or in between sessions
4. Start replying to other people on Twitter about the conference
5. RT good tweets with #AAHPM hashtags.
And don't forget to come to the Social Media Workshop Friday AM and you can meet other Twitter users face to face!
Good luck Tweeting!
Monday, February 15, 2010 by Christian Sinclair ·
Twitter really had a big year in 2009, but some of the shine may appear to be wearing off. Sure you have seen it on your preferred 24/7 news channel and everyone and every organization seems to want you to follow them on Twitter (or be a fan on Facebook). But Twitter is still a important force in information dissemination and therefore medical professionals and organizations need to be aware of how this tool can work best for one's information gathering and disseminating practices.
First let's get a few things out of the way
- Saying Twitter, Tweet, Re-Tweet, Tweeple or Tw-(insert word here) sounds stupid. It will never sound cool, I agree. That doesn't mean you should dismiss it. You would still order a PET scan if you found it helpful right?
- Privacy and legal concerns for medical staff abound, but that doesn't mean you have to be a tight-lipped recluse and never share your knowledge. You can be smart about it.
- You are a busy person. Lots of people are busy, but a few clicks on your smartphone while waiting for an elevator may not be too much to ask.
- Using social media to publicly discuss medical issues with patients or families is not a smart idea, despite what idealistic futurists might think.
Phil Baumann (@PhilBaumann (follow him on Twitter!) ) posted a often shared post of 140 Health Care Uses for Twitter which is great for sparking ideas, but after using Twitter frequently for a year I have found the list to not be so exhaustive. My list has a slightly different context as it is viewed from the professional side and not from the patient side. So here are my 11 reasons a medical professional should use Twitter:
Networking (with people you do and do not know)
1. Network with medical professionals in their discipline (doctors and doctors)
2. Network with medical professionals outside their discipline (doctors and pharmacists)
3. Network with medical professionals within one's specialty (ER nurses and ER nurses)
4. Network with medical professionals outside one's specialty (ER nurses and hospice nurses)
5. Following search terms related to your field to see what people are saying
6. Finding media reports about one's field to find what your patients might be reading
7. Extending the reach of topics important to you
8. Giving words of support to those in your Twitter network
9 Posting journal articles, news, blog posts, conference highlights from others supporting your cause
10. Posting links or quotes to talks, articles, blog posts written by you or your team
11. Posting links or quotes to talks, articles, blog posts written by others
Some key aspects of getting to know Twitter is to use it frequently from your phone and your desktop over two weeks and you will start to see how the culture moves. Here is a simple 9 step list on how to become an intermediate Twitter user.
1. Open a Twitter account
2. Enter all the information in your profile accurately and truthfully including your real name and picture. (Social media thrives on authenticity)
3. Use Twitter search to start following key medical organizations and journals for your discipline/specialty
4. Use Wefollow.com to pick influential twitter users in your discipline/specialty
5. Follow people that follow you if their tweets or profile seem to match your interest
6. Follow Twitter lists of people/orgs that are relevant to your field
6. Get whatever Twitter app for your smartphone is best (just Google Twitter + "your smartphone type")
7. Tweet at least 3 different times during the day, 2-4 tweets each time.
8. Reply to people via twitter using the '@' symbol
9. Retweet other people's content if it is good (and you have actually read it yourself)
Bonus step: Follow me @ctsinclair
For further reference see the Mashable.com Twitter Guidebook
by Christian Sinclair ·
Can't always get to a computer to get to Pallimed? Well now iPhone (and iTounch and iPad) users have an option to read Pallimed and Pallimed: Arts and Humanities (including comments to both blogs) with the very first Pallimed FREE iPhone app.
You are welcome Pixel 196,5!by Pixel 196,5
Simple, well thought-out, a great way to keep up with the latest information in palliative care. I've never read this blog before but I'll be following it regularly now! Thank you for doing this.
If you have an iPhone we encourage you to get the FREE Pallimed iPhone app and review it. Maybe it will rise in the standings and more Pallimed naive people may get the app and learn more about hospice and palliative medicine issues.
by Christian Sinclair ·
The AAHPM has a blog! The AAHPM has a blog!
This has been in the works for a while and I am very glad to see it! I am hoping this will be a great new way for the Academy to interact with members and non-members to help grow awareness about hospice and palliative medicine. Go over and say hello!
by Christian Sinclair ·
Friday, February 12, 2010
As we get closer to the AAHPM/HPNA Annual Assembly in Boston (March 3-6, 2010), we will again be calling on Pallimed readers to help spread the word about Pallimed and medical blogging. Believe it or not there are some people out there who think blogs are just for political slams, celebrity gossip, and watching videos of my kids performing magic tricks. But as you know a blog can be a place for serious discussions about vital issues to good clinical practice, public opinion of hospice and palliative medicine and occasionally a funny quip.
This offer is open to any Pallimed reader who wants to grow the knowledge of hospice and palliative medicine professionals. A street team kit will be sent out free of charge to any Pallimed reader who requests one. If you are so enthusiastic that you would like more than one kit just ask.
Included in the Pallimed Street Team kit:
- A set of 20 Pallimed 'P' Stickers
- A set of 20 Pallimed business cards
- 2 5x7" mini posters
- A Pallimed Prize Pledge sheet
- A special treat for you (non-edible)
So how do you make the best use of the Pallimed Street Team kit?
Stickers: The 'P' stickers are great additions to any name tag while at a conference to help you find other readers of Pallimed thereby creating a bigger sense of community. And when someone asks you about the 'P' you can tell them about Pallimed. They were a great hit at the 2009 conference. I ran out of mine!
Business Cards: The Pallimed cards are great to hand out to members of your hospice or palliative care team or peers you see at regional and national meetings. They are especially helpful if you run out of Pallimed 'P' stickers or are too embarrassed to wear a 'P' sticker on your badge. (Why would you be embarrassed? They were very popular last year!)
Mini Posters: Great to hang up at bulletin boards around conferences or at tables with lots of stuff to pick up. (But don't be rude and steal someone's push pin or sweep flyers off a table just to make room!)
Pallimed Prize Pledge Sheet: Sign up people to pledge any amount towards the Pallimed Prize announced last month to encourage hospitals to support Palliative Care teams through advertising. This obviously will take a little more gumption on your part. Instructions on how to best make use of this will be included as well as discussed in an upcoming blog post.
Special Treat: I have not yet decided on what this will be but it will be a collectors item. But if you are signing up for the Pallimed Street Team just to get this, you have to re-examine your priorities!
If you want them before the AAHPM Annual Assembly email me (email@example.com) by Monday February 23rd so I can get them in the mail to you. I will have a few kits on hand at the assembly, but they won't have the special treat, so let me know soon. If you are going to any other medical conferences or just would like to spread the word locally, you can also request a kit, it just might come a little later.
Why use these viral or guerilla marketing techniques? Our biggest growth has always come from word of mouth from our readers which is so appreciated. And we have never and will never take any advertising so we have no budget! If you want to help...great! If this is not your gig, then that is OK too!
A special thanks to members of 2009's Pallimed Street Team:
And a very shy and reluctant Drew R.
Friday, February 12, 2010 by Christian Sinclair ·
Since Drew is taking a little time off to play HGTV, I wanted to welcome our first guest blogger, Brian McMichael, MD, a Physical Medicine and Rehabilitation resident with a keen interest in palliative medicine. He has spent some quality time crafting wonderful comments to Pallimed and GeriPal, so we decided to invite him to guest post on Pallimed.
If you are interested in posting on an occasional basis to Pallimed, please email Drew and Christian (our emails are all over this blog) and we will fill you in on the requirements/details. If you have read Pallimed you understand the basic approach and topics we like to cover. Academic yet conversational reviews of palliative care and hospice related articles (preferably from non-core palliative medicine journals) are our bread and butter but if you have a great topic feel free to shoot us a line. Advertisements or endorsements of programs, organizations, blogs, etc is not what we are looking for. We will continue to maintain our no-ad policy.
If you become a regular guest here we can always let you in on the inner workings and make you a contributor, which comes with a nice benefits package. (i.e. a Pallimed coffee mug)
by Christian Sinclair ·
For those of you who do not stray to far from the main blog, here is a quick summary of the posts from January 2010 Pallimed: Arts & Humanities blog by Amy Clarkson, MD and Amber Wollesen, MD.
Death and Harry Potter
Amber reviews the multiple themes around death in the popular series of the boy wizard.
I Still Do: Loving and Living with Alzheimer's Dementia
Amy discusses a writer/photographer's first hand account of watching her husband succumb to Alzheimer's. The author even commented on the post!
Amber talks about the 2001 film and palliative care themes around the sense of time in a chronic illness.
In this post, the story of an unclaimed body is something we occasionally encounter in hospice and palliative care. Amy explores how different groups have addressed this challenge.
by Christian Sinclair ·
Thursday, February 11, 2010
- Greater ICU use in the last 6 months of life
- Larger size, and
- For-profit ownership vs government ownership
Teno JM, Mitchell SL, Gozalo PL, Dosa D, Hsu A, Intrator O, & Mor V (2010). Hospital characteristics associated with feeding tube placement in nursing home residents with advanced cognitive impairment. JAMA : the journal of the American Medical Association, 303 (6), 544-50 PMID: 20145231
Thursday, February 11, 2010 by Brian McMichael, M.D. ·
Monday, February 8, 2010
NEJM has a paper which pushes the last several years' worth of fMRI studies in patients in the PVS or MCS (persistent vegetative state; minimally conscious state) to the next level. (See here for other blog postings about this.) There have been a handful of reports in the last few years of patients clinically diagnosed as being in a PVS, who have some fMRI evidence of cortical activity (e.g. have 'normal' responses to hearing their name spoken, demonstrate normal cortical responses to instructions such as imagining they are playing tennis - by normal I mean show responses similar to healthy controls in that the appropriate areas of the motor cortex show increased activity, etc.). This study is builds on that, and the authors describe identifying one subject who could answer yes/no questions via fMRI.
Let me explain. First, the proof of principle. They had 16 healthy subjects imagine either playing tennis or walking around a familiar environment imaging what they'd see: reliably in these subjects these tasks would cause predictable, and predictably different, activity seen on fMRI (e.g. in the supplemental motor cortex for the motor task and in the parahippocampal gyrus for the spatial task). Then they told the subjects that they were to answer yes/no questions by, for instance, imagining the motor task for Yes and the spatial task for No. The healthy subjects could do this, and essentially they demonstrated you could use this technique to have people answer Y/N questions simply by having them imagine different things.
Next they tried the imaging tasks on 54 patients who were diagnosed as being in the PVS or MCS. 5 of them could do the imagining task (get results similar to the healthy subjects). Then they chose one patient to test the Y/N answering protocol (it is unclear to me why this specific patient was chosen or why they didn't investigate or didn't report their findings on the other four), and found that this patient could in fact give accurate Y/N answers to biographical questions (name of his father, etc.). He did this for 5/6 questions, repeatedly. This patient, a young man over 3 years out from a traumatic brain injury, was considered to be in a PVS (although the authors indicate some ambivalence about this - there seems to be some question if he was in a MCS: regardless, he was profoundly brain injured and would likely be considered by most to be in a PVS).
My thoughts on this: I think there is no doubt that the previously-established clinical diagnoses of PVS and MCS are going to be modified by this sort of information, and it seems apparent that a small percentage of patients diagnosed as being in a PVS actually have some cortical activity and awareness (on some level, in some way - see below). The sort of idea of the PVS being a 'clean,' homogeneous diagnostic and phenotypic category (no 'higher' cortical activity, no awareness of surroundings) clearly is wrong (at least for a few patients - this study would suggest 2-9%). However, until any of this translates into improved prognostic data (the ability to predict who, if anyone, has a chance of some recovery) or effective therapies are developed (perhaps aided by this technique to identify those patients like to benefit), the clinical situation hasn't really changed. And, as we've discussed on the blog before, the idea that there might be people misdiagnosed as being in the PVS doesn't change in any fundamental way the ethics of giving, withholding, or withdrawing life-prolonging medical treatments in these patients. The fundamental question remains would the patient her/himself want to be prolonged, with medical treatments, in such a state with such a prognosis, and allowing that that patient may have some awareness doesn't necessarily change one way or the other the decision-making. It might for some families/individuals, but not predictably. If you believe in the 'clean' PVS then you can argue that at least they're not suffering so why not continue; if you don't, then you have the added dilemma of a patient truly locked-in, unable to communicate thirst, pain, hunger, love, etc. and that's not necessarily 'better' than being 'vegetative.'
As perplexing and challenging as this research is, I think we have to keep this perspective at the forefront as these sorts of responses are inevitable. This research is important, and it might change things, but not in the way some automatically assume.
Of course the logical extension of this technology is The Captain Pike scenario (for those few 'PVS' patients who can respond); those patients, if felt to be sufficiently decisional, could theoritically communicate their own wishes.
How one would determine that - and the gulf between answering 5 biographical Y/N questions and establishing that a patient is 'conscious,' is discussed in an associated editorial, which has a more detailed exploration of how we really don't know what any of this means yet.
The mind is an emergent property of the brain and cannot be "seen" in images. The article by Monti et al is provocative; however, physicians and society are not ready for "I have brain activation, therefore I am." That would seriously put Descartes before the horse.(Image via Memory-Alpha.org, which uses a Creative Commons share-alike license.)
(Eric Widera at Geripal has also posted about this article; he has a nice summary of some of the media reporting, such as it is, about this paper.)
Monday, February 8, 2010 by Drew Rosielle MD ·