Monday, September 29, 2008
The New York Times featured an article on color-coded bracelets for quick communication of vital health information. (Also noted on NYT Health Blog w/ comments.) Recent efforts by states to coordinate the bracelet colors of allergy (red), at risk limb (pink), fall risk (yellow) and do not resuscitate (purple) have hopefully decreased confusion for employees who may have recently worked at another institution with a different color scheme.
Apparently* in 2005, a nurse mistook yellow for DNR when it meant restricted limb and a patient nearly died. (*I could not find any news record of this case but the New York Times describes it as notorious. Yes, we sometimes do our own primary research.)
Some of the concern with this new push for standardization is the not-new worry that patients don't want to see DNR on their wrist band, nor do their families.
The nation’s leading hospital-accreditation agency, known as the Joint Commission, has expressed caution about the new system, citing concerns about branding patients by their end-of-life choices, or inadvertently broadcasting those choices to family and friends who have not been consulted. The commission also said that children who do not understand the system had been prone to trade the wristbands like baseball cards.The branding of patients is a somewhat valid issue but as the article later states most patients are willing to talk openly about their decisions. The article describes them as being proud of their choice. It may be those staff or family who are uncomfortable with the DNR that feel paternal and want to protect the patient by avoiding subtle reminders of what the patient lives on a daily basis. The 'kid swapping bracelet issue' is easily solved by making sure they are on tight enough.
Another interesting quote:
In Arizona, one hospital embossed its purple bracelets with a white dove carrying an olive branch, rather than D.N.R., while another chose the initials A.N.D., for “allow natural death,” as a gentler alternative. Kim Miyauchi, associate nursing director at Kingman Regional Medical Center, the Arizona hospital that uses the white dove, said officials there worried that wearing the initials D.N.R. on one’s wrist was “a little bit harsh,” and also failed to convey nuances best captured in a medical chart, as with a patient who wants medication for heart failure but not to be shocked by a defibrillator. “Sometimes people want varying levels of treatment at the end of life,” she explained. “Sometimes it’s not so clean as just don’t do anything.” (italics mine)As Drew has said before being ill and dying is not an easy time, so pretending that a change of words or letters may make someone feel less sad diminishes the impact of what caring staff can overcome. Do Not Resuscitate** is explicit in what it sets out to do. Allow Natural Death (AND) could mean a whole number of things, and once it becomes de rigueur, people will be clamoring for another terminology change. And AND resembles 'and' which is a conjunction and can
The last quote is an important one since it perpetuates one of the biggest stereotypes of hospice and palliative medicine. My job description does not include 'do nothing' for my patients. A whole medical specialty like palliative medicine can not be constructed around 'doing nothing.' Communication, education, symptom control, conserving dignity, advocacy, coordination of care, and so on and so on.
To address the nuances of end-of-life decision making compasisonate conversations followed by clear legible documentation of wishes and goals, followed by clear detailed orders in the medical record is the best solution. A bracelet is a shortcut, and shortcuts have risks but in an emergency this could be vital information to signal a clarification of the DNR order in the chart.
** And to be more explicit, some advocate for Do Not Attempt Resuscitation since outcomes are by no means guaranteed for a survival after the initial resuscitation.
Monday, September 29, 2008 by Christian Sinclair ·
The Journal of Medical Ethics has a case discussion provocatively titled 'suicide by advance directive.' The case involves a woman who tried to commit suicide by an insulin overdose who was ventilator dependent and in a coma (who had a poor, but uncertain, prognosis of neurologic recovery) who had an advance directive saying that she would not want to be on a vent if her prognosis was poor etc. In fact, she lay her advance directive next to her when she tried to kill herself, and it was obviously ignored by EMS/the emergency department as would be the standard of care with any suicide attempt.
The report analyzes the decision making that occurred, eventually leading to withdrawal of life-prolonging treatments including the ventilator and the patient's death. It's clear to me from the discussion however that it's not fair to label this a 'suicide by AD.' A long, careful decision-making process occurred with the patient's loving family, her doctors, and an ethics team which clarified that the patient would not want to be maintained in such a state under any circumstances. The AD was one piece of 'supporting evidence' for the patient's wishes/values, but it was not applied blindly and without great reservation and careful deliberation. Not intubating the patient in the first place because she had an AD next to her or a DNR bracelet on her may reasonably constitute a 'suicide assisted by an AD' but not this case.
by Drew Rosielle MD ·
Friday, September 26, 2008
Cancer has a paper looking at the prognostic implication of physician-patient disagreement about performance status. The data are taken from a several multi-center therapy trials involving ~1600 patients with metastatic lung or colorectal cancer in which patients and physicians independently rated performance status (using ECOG and/or Karnofsky scores). For some reason these data are from trials done in 1987-1990. It's unclear to me why such old data were used...no trials since then employed both physician and patient assessment of functional status?
Friday, September 26, 2008 by Drew Rosielle MD ·
Image via WikipediaDuring these feisty political times in the United States, it is important to remember that we should all go out and vote. But it is important to remember there are many people who can't get out to vote on Election Day or may have a short enough prognosis resulting in death before Election Day. Being engaged in the political process and fulfilling one's civic duty may be important roles to be fulfilled for dying patients.
Approximately 5,500 people die each day in the US and since many states have absentee voting systems in place as early as this week this could be a big impact. 38 days left until Election Day multiplied by 5,500 voters = 209,000 votes! Are hospice patients the new soccer moms?
Ensuring your patient can vote if that is something they want to achieve before death is an important function for hospice and palliative care staff. Here are some useful links and tips to consider:
- If you are going to get out the vote with hospice patients, you should ask universally, and not just the patients who have the same political signs in their yard as the bumper sticker on your car.
- If absentee voting is available in your state, pursue it now. One for the Table has a National Absentee Ballot Guide with a map linking to each state's guideline and directions.
- Know your state law for the validity of a dead person's absentee vote. Some states count an absentee vote from a deceased person if they died before election day, others do not. I have a partial list below, if you do find the answer for your state, please add it in the comments section with a link if possible to a source.
- Consider if your state has early in-person voting if that is feasible for the patient.
- Voter fraud is a felony charge, so if you think you might take advantage of this situation, it would pay to think twice.
- There is no test of competence in voting (insert political joke about elected representatives here), so don't bother questioning it, because there is not legal ground as far as I have researched.
- The issue for clearly incapacitated people (such as in the ICU, in a coma, PVS) is not clear. Can voting be a part of your advance directive? I don't think it has been tested in court. Yet.
- In many areas those under guardianship may not vote. Please check your local laws to clarify.
Early (Absentee/In-person) Votes Cast by a Living Person Before Election Day Who Dies Before Election Day
Early (Absentee/In-person) Votes Cast by a Living Person Before Election Day Who Dies Before Election Day
States with Unknown Approach**
* American Samoa
* District of Columbia
* New Hampshire
* New Jersey
* New Mexico
* New York
* North Dakota
* Northern Marianas Islands
* Puerto Rico
* Rhode Island
* South Carolina
* Virgin Islands
**Many states do not have the people-power or technology to match records and so it they may not have a clear law on the books in how to treat this situation. But if you see your state listed as Unknown help other readers out and do a little Google search, it would just take 5 minutes.
by Christian Sinclair ·
Wednesday, September 24, 2008
Has your inbox been flooded with ways you can advocate for hospice and palliative medicine issues? Are you having a hard time keeping track of which legislators you have written about which issue? Well for your convenience they are compiled below.
Medicare Hospice Protection Act of 2008 (via NHPCO) (DEADLINE OCT 1)
The Medicare Hospice Protection Act would delay implementation of the phase out of the Medicare hospice budget neutrality adjustment factor during fiscal year 2009.
Write your representative online here.
National Pain Care Policy Act of 2008, H.R. 2994. (via AAHPM)
The National Pain Care Policy Act of 2008 is designed to address many of these barriers by improving pain care research, education, training, access, outreach and care.
Write your representative online here.
Mattie* & Melinda Bill, HR 6931 (via Children's Hospice International)
Increase access to CHI PACC (Children's Hospice International Program for All-Inclusive Care for Children and Their Families). Unlike traditional hospice and palliative care models, a CHI PACC program provides a continuum of care for children and their families from the time that a child is diagnosed with a life-threatening condition — with hope for a cure — through the bereavement process, if cure is not attained.
Write your representative online here.
Readers who write for other blogs are encouraged to link here or cut and paste directly from this to put on your site. Make this a meme.
Feel free to tell your parents, children, your children's friends parents, peers, collagues, enemies, acquaintences, patients, patient's families, mail carrier, flight attendent, guy at the hot dog stand...
For anyone who needs a refresher on how a bill becomes a law...
*Mattie Stepanek, a child famous for his prose in his Heartsongs books
Wednesday, September 24, 2008 by Christian Sinclair ·
A large congratulations from Pallimed and the palliative medicine community to Dr. Diane Meier, who was awarded a MacArthur Fellowship this week from the MacArthur Foundation*. The fellowship is also know as the 'Genius Grant' since it is given to accomplished individuals in various fields who demonstrate commitment, creativity, and the ability to inspire others. The MacArthur Fellowship award is a generous unrestricted $500,000 grant.
As the director of the Center to Advance Palliative Care, Dr. Meier has helped many hospitals around the country establish and maintain palliative care teams which has in turn affected probably hundreds of thousands of families and patients, if not more. Her leadership with this program as well as her numerous contributions to the palliative care literature makes her one of the pillars of palliative medicine.
Here is a short video (2:38) from the MacArthur Foundation** featuring Dr. Meier.
At the end of the video clip, Dr. Meier accepts the award graciously on behalf of palliative care and all the people who are making it happen. Congratulations and many thanks for your contributions over the years to the field!
What would you do if you got a Genius Grant?
*For all you NPR listeners out there this is the Macfound.org people.
**Slight criticism of choice of language by the MacArthur Foundation in the comments
by Christian Sinclair ·
by Drew Rosielle MD ·
Monday, September 22, 2008
The Journal of Urology has a paper giving some general prognostic data in patients with advanced cancer and ureteral obstruction who require percutaneous nephrostomy tube placement. The paper is a single institution (Japanese) case series of 140 patients who required neph tube placement due to obstructive uropathy from "advanced incurable malignant cancer." The mean age was 57 years, with an equal mix of colon, gastric, and gynecologic cancers represented (75% of patients had one of these).
Monday, September 22, 2008 by Drew Rosielle MD ·
JAMA recently had a clinician's corner piece about spirituality and patient care. It's somewhat of a narrative review of the topic, mostly focused on what the physician's role is in addressing patients' spirituality. The main message is summarized well here:
Koenig notes that multiple studies have revealed that a majority of patients not only would not mind but would even want their physicians to ask about their religious beliefs. At a time when they are vulnerable because of illness, many patients want physicians to know what gives them meaning, comfort, and support. This does not imply that physicians must agree with those beliefs. Physicians must listen respectfully and, if the patient seems to be in distress because of those beliefs, inquire as to whether the patient has spoken to or wants to speak with a chaplain or member of the clergy. Indeed, that is all most physicians are prepared to do, but it is something that they should be willing to do. To franchise this responsibility to a nurse or social worker is to practice something short of the art of medicine, no matter how expert the practice of the science.All well and good. I took pause however with this paragraph:
Although many physicians can appreciate the importance of religion and spirituality for patients, far fewer believe that they must be the ones asking the questions, convinced that others are better suited to this task. ...Far fewer physicians are likely to initiate prayer with patients,believing that to do so intrusively imposes their beliefs or style of praying upon vulnerable individuals. For example, even if a physician politely asks, "Would you like me to pray with you?" this might present a quandary for a patient. If the physician really wants to pray, does the patient under his or her care really have the liberty to decline?Given that the author in the first quoted paragraph clearly advocates physicians asking patients about spirituality, the rhetorical structure of the second quoted paragraph (...far fewer...far fewer) would seem to imply that s/he thinks in fact we should offer to pray with patients (which we clearly should not, other than in very limited circumstances such as the doctor and patient are both members of the same congregation and also pray together outside of the doctor-patient relationship etc.). I read this about 5 times now and have decided that s/he's likely not advocating such a practice but it's a little unclear....
by Drew Rosielle MD ·
JAMA has published letters responding to the systematic review of the effectiveness of palliative care services that Christian blogged on several months ago. 1st letter here, 2nd here, and authors' reply here.
Second, a key outcome in this review was quality of life, using measures heavily influenced by physical function. Function is expected to decline in the setting of advanced illness. Function-based quality-of-life measures are not relevant in assessing palliative care's impact.
by Drew Rosielle MD ·
Friday, September 19, 2008
The internet is the go-to place for patients and families to research health information, but as many have warned the information should be vetted and probably 'discussed with your physician.' Publishing online simplifies the sharing and redistribution of information, which brings the obvious downside of finding useless information and mis-information.
In palliative medicine you see lots of efforts at trying to educate individuals and groups at the local, regional, and national level about the strengths of palliative care and how our field approaches such complex situations. What if for 3 months we got together as a field to ensure searchable content from a high-utilization source like Wikipedia was factual, easy to understand, and accurately reflected the themes, tools, and issues related to our field?
I have occasionally dabbled in Wikipedia editing but have not had the time to get past only a few minor edits on some palliative care related pages. Editing the information is not too hard if you know how to use a computer. Some of the formatting guidelines are a little tricky to learn, but for anyone who is dedicated, I bet it is doable.
AAHPM recently had a page started and it has a lot of good information written by Crazyerinsync, whoever that is. But more could be written, for example I added the locations of several of the Annual Assembly locations for historic reference.
Here are some good examples of palliative care related articles on Pallimed:
Opioid: There is a lot of information on this page that I have not been able to find easily in journals or books. Things I have confirmed from the Wikipedia page from other sources have been pretty accurate. But there is still room for clean-up and refined editing, for example:
In palliative care opioids are always used in combination with adjuvant analgesics...A few good editors could really see this is not wholly accurate. It should read 'are usually' or 'are commonly.'
Generally most of the specific medicine pages are pretty well detailed, but could you some fact checking and clearer editing. Morphine is one of the better ones and it was a recent 'featured article on the Medicine Portal, but hydromorphone is long and rambling.
Some of the less stellar examples inc
Palliative Care: The page is all over the place and has no coherence. Actually 'hospice' redirects to 'palliative care' which is unusual in that many people have some understanding of hospice but are not quite familiar with the term 'palliative care.' There is enough nuanced differences to the general reader of Wikipedia, that I believe 'hospice' and palliative care' should be separate pages.
Terminal Sedation: Not very detailed, especially about the ethical arguments for and against. Probably should be renamed 'palliative sedation.'
Do not resuscitate: Sorely lacking accurate and supported data regarding survival after CPR. Wikipedia editors have even tagged it as having questionale neutrality. The 'CPR' article is actually written pretty well. It would be nice to see the DNR article with that much information.
Children's Hospice: Mostly just a bunch of lists.
Advance Directives: Nothing more then a pamphlet of info. Simply descriptive.
Defibrillation: No information regarding ethics of deactivation.
Anorexia and Cachexia: Hungry for more material.
Prognosis: Did anyone see this coming...not much there.
So do any readers have any ideas of how to rally a project of storming Wikipedia to create a whole lot of new content and reorganize and edit some of the current palliative care related material? Even if it just started with identifying articles to be worked on as a community that would be a start. If there is enough interest we could start a WikiProject collaboration.
Would it be helpful if Pallimed highlighted 2-3 articles per month to be worked on?
Would it be helpful to start another blog for those interested in a project like this?
Help brainstorm this out...even if you think this is a dumb idea. Say so!
Friday, September 19, 2008 by Christian Sinclair ·
MORPHINE = MED-X
A video game gets a big 'X' from Australia after it is cited for portraying real world drugs (namely morphine) as a power booster for your character. In Fallout 3, if your character takes morphine they become stronger. (I guess because they are immune from pain?) Now if that were the effect that we had to constantly educate about, I do no think there would be such strong refusals of morphine. "Here take the morphine, it will make you stronger."
The video company eventually changed the name of morphine in the game to Med-X. Now because of this change, and this change only, the game will get a 15+ rating instead of a 18+ rating. The report had nothing to say about the depiction of hyper-real violence or use of crack pipes as 'boosters' in the game. And a number of other video games have also featured morphine.
HOSPICE FILM DOCUMENTARY
Hospice of Michigan produced a documentary called "Except for Six" to help the local community start having conversations about end-of-life issues. Grand Rapids Press has a great article about the creation of the film. The trailer makes the film look like a good one to represent hospice. They are to be commended for a actually producing this film, which took a lot of forethought, financial support and dedication. Maybe it will be shown at some of our field's national meetings? Nudge, nudge.
Thanks US News & World Report for a wonderful headline about the recent Archives of Internal Medicine article: Palliative Care Programs Could Boost Hospitals' Bottom Line. Not exactly the best advertisement for our field. Such a trust breaker. Feel free to add a better headline in the comments. Here is one I thought of off the top of my head: Hospitals Optimize Resources with Palliative Care.
ANOTHER TRUST BREAKER
A nursing assistant for a hospice care facility in South Carolina stole over $10,000 from a 97 year old patient under her care. When people abuse trust like this it can have a much wider impact than just the individual victim. When hospice works well as a team, it is a true benefit because behavior like this can be that much easier to catch.
PICK UP A SIX PACK FOR HOSPICE!
I have seen some creative hospice fund raisers, but this one spins my bottle! Police took confiscated liquor and resold it at a benefit from hospice. My favorite part is that they are planning to do this for each of the seasons. Anyone want to offer some better headlines for this one?
by Christian Sinclair ·
Have you ever wondered what other people might be saying about a particular subject you see on any of the three Pallimed blogs? But to actually remember to go back and check the post is something you never get around to doing?
Well for Pallimed readers who subscribe via RSS* we now have a Comments Only Feed that will keep you up on the latest conversations on the posts. Each Pallimed blog (Main, Arts, and Cases) has its own individual subscription link in the left hand column.
Pallimed: Main Comments Only Feed (About 5-10/week)
Pallimed: Arts Comments Only Feed (About 2-4/week)
Pallimed: Cases Comments Only Feed (About 1-2/month)
We rarely get spam comments 2-3/month and we delete them within 2-4 hours usually, so this should not be a big deterrent. The 'Comments Only' subscription is not available for email subscribers at this time, but if you would like an email subscription option then email me directly or post a comment.
This post will be cross-posted to all three Pallimed Blogs. My apologies in advance for readers who see it multiple times.
*Really Simple Syndication.
by Christian Sinclair ·
Wednesday, September 17, 2008
Social Science and Medicine has a qualitative, ethnographic analysis of breaking bad news practices,** which takes aim at the standard published guidelines. The study involved observation of a palliative care service (from a hospital in Texas), as well as interviews with team members, etc. It's an interesting read, and has transcripts of some doc-patient-family interactions involving bad news (usually terminal diagnosis) disclosures and it's fascinating to get a 'fly-on-the-wall' perspective of these interactions (some were 'better' than others to be sure).
The rhetorical framework of the piece involves looking at prominent breaking bad news guidelines (e.g. the SPIKES model - Setting, Perception, Invitation, Knowledge, Empathy, and Strategy/Summary) and noting how real-life encounters don't resemble what the model implies at all. Things like the reality that bad news disclosures often aren't/can't be planned, are more than a patient-doctor dyad and often involve other family members and clinicians, and frequently don't involve one central 'piece' of bad news (the unwelcome news is often multi-part and cumulative: the scans were worse, the chemo isn't working, you are dying, time is short, you need more help than your family can provide and you can't go home safely, etc. etc.). I'm not going to belabor this much - I think most of us who both routinely break bad news and teach others (med students, residents, etc.) how to do it realize that the guideline/recommendations don't describe reality very well.
Which doesn't mean that they're bad, and all this begs the question how should we actually teach others how to do this?
A story: I have at times been involved with teaching medical students about breaking bad news - these are 2nd year students who don't have any 'real' patient-care experience. They are, in fact, taught the 'guidelines' (some iteration of the SPIKES approach) and then are thrown into a role-play in which they have to break some horrible news to a patient. The most common comment I've heard from these students has been along the lines of "I never thought this would be so tough." My initial reaction to that statement was "My God, why on earth did you ever think this would be easy?" Well I think there are two reasons:
- All role-playing neophytes are shocked at how it can be tough, challenging, and emotional.
- We taught them a guideline and they figured they'd just have to go 'by the book' and all would be well.
Getting back to (2), then, it seems an important part of the pedagogy of BBN should be that you can do things by the book and people may still hit the ceiling (and again, why the hell not? - seems like a reasonable reaction, at least initially, to hearing devastating news - and it's clearly adaptive for some people - I frequently contemplate what I'd look like if one of my boys developed a life-threatening illness and it wouldn't be pretty).
Getting myself off that soapbox, and heading back to the guidelines and accepting that the 'process' they describe usually doesn't (and shouldn't) unfold linearly as the guidelines suggest - does that mean that they aren't helpful in teaching people how to do this? My experience is that they are incredibly helpful, and not because they outline a step-wise procedural approach to BBN (like performing a lumbar puncture or central line placement) but because they contain a lot of wisdom about the issues at play - they give med students and residents some conceptual framework for how to think about these interactions. Setting: prompts you to control what you can control, and gives some guidance for those times in which the BBN interaction really can be planned. Perception: teaches students the importance of eliciting and 'talking to' the patient/family's pre-existing base of knowledge and experience (however medically 'inaccurate' that may be). Invitation: focuses students on the empathetic task of asking/finding out/intuiting how much/what the patient/family are actually ready to hear - what they're ready for - what needs to be said today vs. the next visit (how hard/fast/if to bring down The Hammer is how my team talks about it). Etc. Etc. These are, and I feel like a tool writing this but here I am, emotional intelligence skills which can be taught to most people, and you've got to start somewhere, and most people pick up on this, and understand 'real life' BBN is a haphazard and multiple affair, especially if we teach them that.
If you're not ready to cancel your Pallimed subscription after reading this, please read more in the next post!
Wednesday, September 17, 2008 by Drew Rosielle MD ·
...Continuing a theme from the post above, Archives of Internal Medicine has an article about 'titrating' guidance for patients who are facing complex medical decisions. It's a thoughtful exploratory piece which prompts clinicians to consider how they counsel patients/families about medical decisions based on a spectrum of risk:benefit profiles of medical decisions (e.g. high benefit, low risk; uncertain benefit uncertain risk; low benefit, low risk). It shares some features with this typology of decision making in Annals of Internal Medicine a few years back.
This article is specifically framed, however, in the context of patients facing highly morbid, life-limiting illnesses (the paper uses a case of a patient with a large stroke and his family facing the decision of providing gastrostomy feeds, etc.). Pursuant to the post above, what is really helpful about this article is that it shares a way of thinking about medical decisions (and our discussions with patients/families about those decisions) that describes some of those background 'emotional intelligence' aspects of these conversations that are not captured by the simple, procedural breaking bad news protocols such as SPIKES. I particularly liked its discussion of scenarios in which any treatment would have limited/zero benefit and there aren't too many 'Big' medical decisions to be made, and the fact that those encounters, even when there are no 'decisions' to be made (other than where someone dies), can be fraught with emotion and peril. A good one for the teaching file, particularly for fellow-level trainees.
by Drew Rosielle MD ·
JNCI has a metaanalysis of the pharmacologic treatment of cancer related fatigue. Most interesting was that it pools data on the two randomized, placebo-controlled trials looking at methylphenidate for cancer fatigue (one from a 'palliative care' population which we blogged about before and the other a breast cancer chemotherapy population...I can't find the actual paper referenced in the article but it appears to be regarding this trial). Even though the palliative care population article was negative, and showed no treatment benefit for methylphenidate over placebo (there was a trend towards benefit but it wasn't statistically significant), when those data were combined with the other trial the authors of the metaanalysis concluded that indeed methylphenidate is effective. (The data could be combined relatively easily as both trials used the same outcome measure.)
by Drew Rosielle MD ·
ANZ Journal of Surgery has a study looking at outcomes in severely head injured older adults. It's a retrospective case series looking at the hospital course and outcomes for 96 head injured older patients - using data from a statewide trauma registry database in Victoria, Australia. Patients were older than 65 years and had a Glasgow Coma Scale score of 8 or less as measured by paramedics on the scene. The study provides some general, ball-park level prognostic data. It's not good, of course. In-hospital mortality was 70%. Mortality for those over 85 years was 100%, and notably 73% of those patients were managed 'palliatively' only (that's as assumption they worked in using the registry data - if the patients had no surgeries and weren't admitted to an ICU they were assumed to have palliative-only management which is probably true for most of those patients given their GCS.) GCS was not associated with mortality in these patients; nor was it associated with a decision for 'palliative' treatment - that seemed to be based more on age.
by Drew Rosielle MD ·
Monday, September 15, 2008
So far the world of Hospice and Palliative Medicine related blogs has been slower to grow than emergency room staff or primary care physicians, but we are starting to get a good little community here. Two blogs that should be highlighted are "Dethmama Chronicles: The true adventures of a hospice nurse" and "DNR/DNI" by Leo Levi.
Dethmama Chronicles is written anonymously by a home hospice nurse who works the night shift and responds to crises and death calls. The role of the hospice nurse in this situation can change instantly several times within one visit. She is candid and entertaining in her writing about in-home experiences like being threatened with a knife by a bereaved family member, dealing with intoxicated bereaved family members (in two parts!), and a miscalculated prognosis leading to a new renter in Grandma's old room. She also peppers her posts with Fun-Filled Funereal* Facts and a recurring series of web highlights about hospice issues. There are even some cats and dogs in there if you need some non-palliative medicine material.**
DNR/DNI by Leo Levy, a pseudonym for an anonymous MICU RN who has a knack for palliative care issues. Leo writes in a longer form with stories that have many different components which are occasionally strung along several blog posts. A longer series about a patient Mrs. Hardy was particularly fascinating and I could imagine many palliative care professionals could identify with the story.
If you are interested in reading these blogs regularly consider trying an RSS reader (if you have not already.)
- Hospice Blog by Hospice Guy (July 2004!)
- Bioethics Discussion Blog by Dr. Maurice Bernstein (July 2004!)
- Pallimed by Rosielle, Sinclair, and Quinn (June 2005)
- Hospice and Nursing Homes Blog by Frances Shani Parker (January 2007)
- Reflections by Dr. Bruce Campbell (April 2007)
- Medical Futility by Law Professor Thaddeus Pope (July 2007)
- Hospice Foundation of America Blog edited by Krista Renenger (August 2007)
- DNR/DNI by Leo Levi (April 2008)
- Dethmama Chronicles by Dethmama (June 2008)
Are there other blogs our readers follow that focus on palliative medicine issues as a central theme? Are you going to start a blog?
*I was surprised to find "funereal" is an actual word. Score one for my crossword puzzles.
**Hospice Guy broke the blog to the world first, but I had followed it for a while before that.
Monday, September 15, 2008 by Christian Sinclair ·
The NHPCO (National Hospice and Palliative Care Organization) has kicked it up a notch in regards to the proposed cuts to the Medicare Hospice Benefit.
Not only has NHPCO sued Medicare (CMS), but 10 bipartisan members of Congress have now proposed the Medicare Hospice Protection Act of 2008. This bill is meant to delay the phaseout (reduction) of the wage index Medicare had put forth earlier this year. The NHPCO is working with a advocacy (or lobbying) organization called the Alliance for Care at the End of Life (itself a creation of the NHPCO.) Both sites have a lot of information about the act and tools to easily write your local legislators to give support.
An excerpt from a letter from the sponsoring legislators to the White House gets to the importance of this act:
Cuts of this magnitude need to be carefully scrutinized through an open and transparent process and should not be rushed. This proposal to eliminate the current budget neutrality factor was proposed for the first time by the Administration’s FY2009 Budget. The Medicare Payment Advisory Commission (MedPAC) and CMS are just beginning to study hospice payment issues. If a final rule is issued without a better understanding of all aspects of hospice reimbursement, the Administration risks issuing a regulation that is unnecessary and overly burdensome on hospice providers and patients.Some important things to note:
- This legislation only delays the reduction by one year to allow for further negotiation.
- The reduction will amount to an averaged 4.5% reduced payment to hospice agencies
- Costs for hospice care are increasing (gas, nurse salaries, insurance premiums)
Hospice Guy at Hospice Blog has two short posts about the lawsuit and the legislation, as does the Hospice Foundation of America Blog.
Quick side comment: All the press releases refer to terminally ill patients or end-of-life-care (with or without hyphens); but curiously 'death' or 'dying patients' are rarely mentioned. Maybe this is a topic for another blog post. Any readers have thoughts on this measured choice of words?
*I bet some other people contacted Sen. Roberts as well. But my letter was a really good one.
by Christian Sinclair ·
Thursday, September 11, 2008
Archives of Internal Medicine published a large study looking at cost savings associated with hospital palliative care services in the US. There have been press-releases about this circulating the palliative care email circuit, which many of you have likely seen. The study uses hospital administrative data (from 8 major CAPC/PCLC affiliate hospitals - a mix of academic and community hospitals throughout the US), and compares costs (costs were measured the same way across hospitals) between patients who received PC consultation and those who didn't. Propensity scoring was used - PC-consultation patients were matched with nearly-identical patients (based on a propensity score model) who didn't receive PC consultation, and then the two groups were compared. In-hospital-death patients were analyzed separately from those who were discharged alive. (FYI: my institution is one of the sites, but the data are from before my time here which is probably a good thing since I have a habit of giving Xigris, TPN, and Epo to my dying patients. I have no involvement with this paper or research project.)
The analysis included ~ 2600 PC-discharged patients (matched to 18000 usual care patients) and ~ 2300 PC-deaths patients (matched to ~2100 usual care patients): both categories included ~90% of all PC patients eligible for the study. Length of stay was the same between PC and usual care patients (which is clearly important given that hospital costs are closely related to LOS). Major outcomes: for discharged-alive patients PC consultation was associated with ~$2600/admission (~$280/day) in cost-savings. For patients who died, savings were ~$6900 per admission ($549/day). When adjusted for costs of PC services the numbers were still in the many thousands per admission. For those of you who are interested they break down where the cost savings lie (e.g. lab, pharmacy, imaging, ICU costs).
All well and good, and not surprising (perhaps it's not surprising to me since my boss tracks such data locally and shares it with us all the time). The obvious question, though, is to ask if the involvement of the PC service was incidental to the cost savings (ie - the decisions to limit certain treatments were already made and PC was called in afterwards to assist with enacting the 'new plan'). To rephrase - while PC consultation is associated with lower hospital costs it is not necessarily the cause of those cost savings. The authors looked at that question by looking at when the cost savings occurred in relation to consultation, and by including mean cost per day before consultation (or a similar time reference for nonPC patients derived from overall length of stay and usual LOS before PC consultation) in the propensity score model. Basically they showed that:
- Costs were similar prior to PC consultation between groups (they weren't dropping off in the PC group compared to the non-PC group prior to PC consultation - that is, the cost savings did, in fact, accrue after PC consultation)
- Cost savings didn't begin to occur until ~48 hours after PC consultation, again suggesting that the PC consultation itself impacted costs and was not 'after the fact.'
- How will this be perceived by patients and families? These findings are great for the profession, and bolster the currently dominant model supporting hospital-based PC services (many programs are supported by hospitals with the idea that they save the hospital money, as it's difficult to support a program by income generated by billing alone). More and more of my patients have some idea of what the word palliative means (it's usually something along the lines of the morphine-hospice-death&dying-pull-the-plug doctors): if it 'gets out' that we're also the save-The-Man-some-money via stopping medical treatment - people may mistrust us some more. I'm not too worried about this: there's tons of evidence that PC consultation improves patient/family-centric outcomes too, and I think most of my patients/families are happy we're involved in the long run, but this is not necessarily a message we need to broadcast from the mountain top.
- What if the dreams of some PC leaders come true and we get involved earlier in disease courses, expand our patient base to include more and more of the not-close-to-dying patient population and the highly-morbid-and-life-threatening-but-not-necessarily-incurable-illness patient population (e.g. BMT patients)? Will these cost savings diminish, or even become immeasurable unless you only include the 'close-to-death' patients? What then will happen to the economic rationale underpinning hospital-based PC services?
Thursday, September 11, 2008 by Drew Rosielle MD ·
Journal of Clinical Oncology has a meta-analysis of palliative radiation for lung cancer. It looks at controlled trials comparing different dosing schedules of radiation with palliative-intent for patients with incurable lung cancer. Briefly, it confirmed that lower-dose radiation is just as effective for symptom palliation than higher-dose radiation (hemoptysis, pain, cough, etc.). This analysis suggests that 1 year survival is modestly improved for patients with higher-dose regimens (by ~5% overall). What I found most interesting was just the simple, natural history information the review provided regarding symptoms (e.g. ~50% of patients had complete resolution of their chest pain after radiation, 30% had complete resolution of cough, etc.).
by Drew Rosielle MD ·
Another recent Journal of Clinical Oncology has a study about racial and ethnic differences in advance care planning in cancer patients. This is an analysis of the Coping with Cancer Study data (which we've blogged about before and I won't go into detail about again other than to say it was a large prospective multi-institutional study involving several hundred cancer patients all of whom had a likely prognosis of less than 6 months at the time of study enrollment). They found that Black and Hispanic patients were less likely to have an advance directive than white patients (and in this case much less likely: 80% vs 50%), were more religious, and were more likely to endorse life-prolonging treatment wishes even if had only a few days to live. Dishearteningly, only 30% of patients had had any sort of discussion with their physicians regarding end of life care - this finding did not differ between groups. Fewer Black and Hispanic patients acknowledged they were terminally ill compared to white patients, however such acknowledgment was associated with increased advance care planning in all groups. The really interesting finding is that differences in advance care planning persisted even after adjusting for demographic factors (age, education level, etc.), terminal illness awareness, religiosity, and preference for life-prolonging therapy when dying. Suggesting, that is, that these differences are either deeply cultural (and thus not as impacted by demographics, illness understanding, etc.) and/or related to how/the frequency with which clinicians bring up advance care planning with patients from different ethnic groups.
by Drew Rosielle MD ·
Friday, September 5, 2008
The WSJ Health Blog highlighted a second case out of Massachusetts where a patient and their prescribing physicians (five of them) are being sued for a motor vehicle accident that occurred while the patient/driver was taking opioids. The reason the physicians are being sued is for negligence in education or counseling to the patient regarding driving and opioids. To my knowledge the pharmacy or pharmacists dispensing the medication are not involved in the lawsuit.
The Massachusetts Supreme Court ruled in favor of the plaintiff in a similar lawsuit against a prescribing physician in December.
Some quick details of each of the cases.
Dec 2007 Ruling: 75 year old male with COPD and lung cancer on oxycodone, Zaroxolyn, prednisone, Flomax, potassium, Paxil, oxazepam, and furosemide. While driving his car, he killed a 10 year old boy. PCP sued successfully.
Aug 2008 Case: 77 year old female with breast cancer. Medications are not revealed at this time. Killed physician and secretary inside radiation oncology clinic with car while trying to park. 5 MD's including PCP are defendants.
Opioids are a common class of medications in the palliative care toolkit for symptom control and thus our field needs to be aware of potential legal consequences of our frequent prescription tendencies. This is particularly relevant because opioids and many other common palliative care medications can cause cognitive impairments. Cases like this make me think there will be an even greater barrier to prescribing these medications appropriately and effectively. Clinicians are already crunched for time, and to include counseling for avoidance of driving for EVERY possible medication that could cloud thinking would be an impossible task.
And there are way too many questions:
- Where does the liability stop?
- Is the pharmacist liable?
- Is the weekend on-call doctor who sees the patient in the hospital while they are already on medications that may alter mental status liable, because they did not say anything?
- How about the drug maker for not having clear warnings on the insert (that no patient reads)?
- If we start blanket counseling does that mean I should counsel the comatose patient in the ICU on ativan and morphine drips just in case they survive and still need these medications post discharge?
- How do we determine which drug classes to apply this to since lasix was implemented in the first case?
- How would hospice agencies be affected?
- What about the hospice nurse who actually sees the patient and knows they are driving as opposed to the physician who may presume the patient is home/bed bound while on hospice?
Friday, September 5, 2008 by Christian Sinclair ·
In a short article in American Journal of Hospice and Palliative Medicine a palliative care team in India describe their observation that some patients who did not experience constipation while receiving IV morphine required laxatives for constipation when converted to oral morphine. They did a 5-month retrospective chart review and found 11 patients who did not experience constipation while on moderate doses of intravenous morphine. They had a pretty "clean" sample: opioid-naive patients admitted for severe pain, no malignant or comorbid GI pathology, not using laxatives prior to admission. When switched to equianalgesic doses of oral morphine, 7 of the 11 patients required laxatives for the remainder of their inpatient stay and were discharged on laxatives.
by Thomas Quinn, APRN ·
Tuesday, September 2, 2008
The New England Journal of Medicine recently had a case series and several editorial (here, here, and here) about organ (heart) donation after cardiac death ('DCD') in infants. All articles are available as free full-text. DCD describes the practice of procuring organs from a patient after he/she has been declared dead based on their heart stopping beating after life-support such as a ventilator and pressors are stopped (as opposed to them being declared dead based on brain death criteria which is, currently, the most commonly used method). The series describes one center's experience with this in 3 infancts, the protocol used, and some basic outcomes (for the heart transplant recipient infant - which were generally good).
The editorials highlight some interesting points, and I learned a lot, especially as I assumed I was one who was supposedly well-informed about the major issues surrounding DCD. These cases involve heart transplantation and it's apparently controversial to transplant hearts after DCD. (the simplified version of the argument being that one is declaring someone dead because their heart has, supposedly, irreversibly stopped beating - if you go on to transplant the heart then clearly that organ was not permanently non-functional - of course it may have been permanently non-function in that patient's body due to other causes...). And thus there is a debate if whether death should be declared after there is no chance of 'auto-resuscitation' (the heart spontaneously resumes beating on its own) - which anecdotally is in the 1-few minutes range depending on the population.
Further confusing variations in DCD practices are also described (in this editorial):
The final editorial argues that the 'dead-donor' rule itself is the problem (i.e. the criteria that the patient has to be dead in order to have their organs removed):
Another unconventional protocol used by several hospitals for donation after circulatory death involves providing ECMO to the donor immediately after death is declared. If ECMO adequately provided circulation and oxygenation to the donor's entire body, it would retroactively negate the death determination by preventing the loss of circulation and respiration from becoming permanent or irreversible, potentially "reanimating" the heart and preventing the progression to brain destruction on which the circulatory criterion of death is predicated. A University of Michigan ECMO protocol for procuring abdominal organs apparently avoids this problem. During ECMO, an intraaortic occlusion balloon blocks all blood flow above the diaphragm so that only the abdominal organs are perfused with oxygenated blood. The thoracic organs and brain are isolated from this perfusion circuit and are destroyed by ischemic infarction. If blood flow above the diaphragm is successfully blocked, this protocol does not negate the previous determination of death. Ex vivo ECMO, in which the procured organ is temporarily perfused and preserved after removal from the donor's body, is another technique that is under investigation.
What has been the cost of our continued dependence on the dead donor rule? In addition to fostering conceptual confusion about the ethical requirements of organ donation, it has compromised the goals of transplantation for donors and recipients alike. By requiring organ donors to meet flawed definitions of death before organ procurement, we deny patients and their families the opportunity to donate organs if the patients have devastating, irreversible neurologic injuries that do not meet the technical requirements of brain death. In the case of donation after cardiac death, the ischemia time inherent in the donation process necessarily diminishes the value of the transplants by reducing both the quantity and the quality of the organs that can be procured. Many will object that transplantation surgeons cannot legally or ethically remove vital organs from patients before death, since doing so will cause their death. However, if the critiques of the current methods of diagnosing death are correct, then such actions are already taking place on a routine basis. Moreover, in modern intensive care units, ethically justified decisions and actions of physicians are already the proximate cause of death for many patients — for instance, when mechanical ventilation is withdrawn. Whether death occurs as the result of ventilator withdrawal or organ procurement, the ethically relevant precondition is valid consent by the patient or surrogate. With such consent, there is no harm or wrong done in retrieving vital organs before death, provided that anesthesia is administered. With proper safeguards, no patient will die from vital organ donation who would not otherwise die as a result of the withdrawal of life support. Finally, surveys suggest that issues related to respect for valid consent and the degree of neurologic injury may be more important to the public than concerns about whether the patient is already dead at the time the organs are removed.Just assuming, for the sake of argument, that those points are valid, implementing such a protocol in a safe way (to prevent abuses) seems like a nearly impossible challenge. However given that there remains no universally agreed upon way to define death (at least before someone is 'stiff, cold, and blue') it may be necessary. Either way, palliative care clinicians at many institutions are involved with managing the terminal care of patients who have had life-prolonging cared removed with the hope they will be able to donate organs via DCD and so knowing the issues surrounding DCD remains an important competency for our profession.
Tuesday, September 2, 2008 by Drew Rosielle MD ·