MedWorm: Palliative Carer Workers

October open thread

Pallimed: A Hospice & Palliative Medicine Blog — Tue, 07 Oct 2008 04:00:00 +0100

Welcome to a new type of post for Pallimed - the monthly open thread.This will be a monthly post for readers to discuss issues with other readers, request information from other readers or suggest topics for us to cover in upcoming posts. Obviously the subject matter should be somewhat related to hospice and palliative medicine.We look forward to hearing from you. Just click on comments below. (Source: Pallimed: A Hospice & Palliative Medicine Blog)

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Eol discussions and eol outcomes

Pallimed: A Hospice & Palliative Medicine Blog — Tue, 07 Oct 2008 04:00:00 +0100

JAMA (huzzah) has published what will likely be remembered as the core publication out of the Coping with Cancer Study (CWCS)(see our posts here, here, and here for more). This analysis looks at the association between end-of-life (EOL) discussions and several outcomes including patient mental health and aspects of EOL care. Briefly: the CWCS was a prospective, multi-institutional (several cancer centers in Northeast US and Texas) cohort study of advanced cancer patients (metastatic; 'failed' first line chemotherapy) and their family caregivers. It involved an intensive psychosocial assessment including disease understanding at baseline; patients were followed over time and bereavement outcomes were measured in family members of those who died (most ~6 months post-loss). This paper is based on the ~320 who died by the time the analysis was done (total enrollment was a little over 600): median time from enrollment to death was 4.4 months.This study compared outcomes in those who reported having a discussion about EOL issues at baseline vs those who didn't. The presence of an EOL discussion was defined by patients answering positively to the question: Have you and your doctor discussed any particular wishes you have about the care you would want to receive if you were dying? They used 'propensity score weighted' adjustments to balance differences between groups: I can't say that I understand exactly what this means - it seems to be different from the use of propensity scores I discussed previously in the blog. Their use here seems to be, and I trust any statisticians out there will forgive me for saying this, a propensity-score enhanced regression model to adjust for baseline differences between groups. Short story: they used linear and logistic regression models to try to control for underlying differences in the +EOL conversation group and the -EOL conversation group.37% of these patients (who had a median 4.4 month prognosis!) answered they had EOL discussions at baseline. The differences at baseline, for which they adjusted, were: performance status, symptom burden, survival time, and recruitment site. About recruitment site: rates of EOL conversations varied from 16% to 62% depending on which cancer center you were at. Even if you believe the rest of the results here are bogus that wide variation in patient care (because this is a patient care issue) is astounding and cause for alarm.Anyway - reporting an EOL conversation at baseline was associated with major differences (improvements) in EOL care and bereavement and no significant differences in adverse mental health outcomes. Rates of depressive and anxiety disorders, PTSD, subscale scores looking at depressive and anxiety symptoms, etc. were the same between groups, even after adjustment. And the results keep on getting better: in another analysis in which they adjusted further for baseline treatment preferences, terminal illness acceptance, and self-reported desire for prognostic information, rates of ICU admission/ventilator use/resuscitation prior to death were lower and rates of hospice length of stays over 1 week were higher in the baseline +EOL conversation group. These were pretty substantial differences in the relative rates (e.g. 11 vs 1.6% for ventilator use; 66% vs 45% for longer hospice stays, etc.). Ok, I guess that last one is a pretty good difference in absolute rate as well - 20%.These differences in care at the end of life were associated with substantial changes in bereaved caregivers ratings about patients' quality of life (better in those who had less 'aggressive' interventions and who had longer hospice lengths of stay). Bereaved caregivers of patients with more aggressive interventions reported more depression, regret, and other unwelcome outcomes.Some thoughts:Because I like the outcomes I am trying to be cautious in interpreting them. The two big questions that CWCS is trying to answer is 1) does having these conversations hurt our patients by causing emotional harm, and 2) does having these conversations help our patients and their loved ones by improving the care they receive as they die? And these findings overwhelmingly show that patients who report having these conversations are no worse off than those who don't report such conversations and the care received by these patients as they die is measurably different/better and these differences are associated with improvements in outcomes in loved ones. One could also argue that it's not just having these conversations (because one assumes that most patients had an EOL talk prior to their death if not at baseline) but that it's having these conversations relatively early that made the difference.I think the major caveat here, which is one that can't be overcome without a randomized trial (which will never happen, and this sort of study design will likely be the best level of evidence we'll get on this topic), is of course confounding from unmeasured patient characteristics. Two possible sources immediately come to mind 1) patients who willingly report talking about dying with their docs to a relative stranger (a member of the research team) vs. those who don't (e.g. what is actually being measured is not rates of EOL conversations per se but patients' willingness to talk about those conversations, or something along those lines), and 2) patients who reported EOL conversations were more likely to want to have them in the first place and, again, the 'real' difference between the groups is something along the lines of innate patient characteristics regarding openness to EOL discussions, talking about the future, etc. You could imagine that these 'open' patients were more amenable to less aggressive care as they died, may have had more open/sharing relationships with their caregivers which resulted in better bereavement outcomes, etc. The other issue is that they may be measuring a broader pattern of physician behavior, and this reporting of an EOL discussion (or not) really reflects substantial differences in overall physician care for their patients, being more or less likely to offer/recommend aggressive care, etc. and that "-EOL conversation" is a proxy here for, bluntly, bad end of life care.Reflecting on how concerned I am about confounding, I'm asking myself how would I have responded to this if they found that early EOL conversations had no effect on EOL care (would have believed it, and wondered if the measurable differences were too small to be appreciated with an N of 320) or emotionally 'harmed' patients such as by increasing levels of anxiousness (I think I would have believed that too, although it wouldn't have led me to conclude we shouldn't do it but look more into how it's done, etc.). Given that, the real benefits which seem to be associated with such early conversations, and the disappointing rates of these conversations and disparity across treatment centers, I think that the CWCS has given real backbone to the idea that 'early' EOL discussions should be a standard of care for advanced cancer patients, and that this is not some nice fantasy of self-righteous palliative care people who think that talking about dying is 'just the right thing to do' but something backed by good data.It's not a 'moral' question, but a clinical one of ensuring the best possible outcome for our sickest patients.Alexi A. Wright, Baohui Zhang, Alaka Ray, et al (2008). Associations Between End-of-Life Discussions, Patient Mental Health, Medical Care Near Death, and Caregiver Bereavement Adjustment. JAMA, 300 (14), 1665-1673 (Source: Pallimed: A Hospice & Palliative Medicine Blog)

Brain death 40 years on

Pallimed: A Hospice & Palliative Medicine Blog — Fri, 03 Oct 2008 04:00:00 +0100

My leading candidate for headline of the decade is "Are You Brain Dead? Depends on the Hospital." It is from a news article reporting on a study in Neurology (one of the few studies in the entire medical oeuve of 2008 that we have not blogged on). The study authors surveyed the "Top 50" neurology centers in the United States, as ranked by US News & World Reports, on their institutional guidelines for establishing brain death. Three of the 41 responding institutions do not have guidelines. Of the 38 that do, there was considerable variation in the criteria for determining brain death and more-than-expected variance from the guidelines established by the American Academy of Neurology in 1995 and reaffirmed as recently as 2007. It should be noted that 2008 is the 40th anniversary of the recommendation & criteria for using brain death in potential organ donor situations.The reason I am bringing this up is that I ran across another headline, this time in the online version of the Times of London: "Vatican called on to re-open debate on brain death as end of life." It seems that, despite the Vatican having accepted the concept of brain death decades ago, there are those inside the Vatican who are now questioning the concept.Joining the conversation is Economist.com with "O death, when is thy sting?" The tab label on the web page asks provocatively, 'When, exactly, are you dead?' They point out that in the UK the emphasis is on loss of brainstem function, while in the US whole-brain function is evaluated. The fact that death is defined in varying ways is not new. In serious trauma, on the battlefield, and in expected deaths from advanced disease there is nothing obsolete about using the cessation of heartbeat and respirations as the determinant of deadness. But variations in the definitions and use of "brain death" in an era of increasing demands for organ donation raise important ethical, legal, and practical questions. Last year Christian briefly blogged on organ donation after cardiac death. According to the Economist.com article, cardiac-dead donors is the fastest growing proportion of donors. Somewhat odd terminology, but they point out that there were none 10 years ago and 7% in 2006. In August there was a Perspective article in NEJM discussing the 'dead donor rule' and its current applicability/appropriateness given current technology and the growing re-emphasis on cardiac death. The authors appear to be proponents of using cardiac criteria in potential donor situations, but also of calling a spade a spade. They point out that the heart that has arrested in one patient, when transplanted to another and induced to pump on its own, cannot be convincingly said to have been taken from a dead donor. I'm no ethicist, but I think that there are some legitimate "slippery slope" concerns in this conversation. There are plenty of nuances and competing good intentions that are a lot more than philosophical hair-splitting. These are literal matters of life and death that for many people will go beyond ethics and questions of social good, encompassing morality and, potentially, religious dogma.References: Greer DM, Varelas PN, Haque S, Wijdicks EF. Variability of brain death determination guidelines in leading US neurologic institutions. Neurology. 2008 Jan 22;70(4):284-9.Wijdicks EF. Determining brain death in adults. Neurology. 1995 May;45(5):1003-11.Truog RD, Miller FG. The dead donor rule and organ transplantation. N Engl J Med. 2008 Aug 14;359(7):674-5. (Source: Pallimed: A Hospice & Palliative Medicine Blog)

Without mechanical ventilation you will die!

Pallimed: A Hospice & Palliative Medicine Blog — Thu, 02 Oct 2008 04:00:00 +0100

The second one about race and end of life care in JAGS is about using 'enhanced information' as an aide in end of life decision making. It involves surveying 78 older community dwelling adults about their treatment preferences in several scenarios (e.g. advanced dementia is described, they are asked would you want tube feeds, CPR, mechanical ventilation, etc.). The intervention is that some patients were given 'enhanced information' which involved detailed descriptions of the interventions and the study was designed to see if that info had any effect on treatment preferences as well as if it decreased 'decisional conflict' within the subject.I'm not going to belabor the findings other than to say that the enhanced information did have effects, and in fact the enhanced information attenuated African Americans' desire for life-prolonging treatments in the setting of a terminal illness. Interestingly the enhanced information nudged white Americans' towards more life-prolonging treatments. I thought to myself 'that's interesting' and then I read the appendix which contained an example of this enhanced information. Here it is, for mechanical ventilation.Treatment option—mechanical ventilation Mechanical ventilation (MV) can be used to assist you to breathe when you can no longer breathe on your own. MV can provide your brain with needed oxygen so that you can maintain your thinking skills and quality of life. The procedure This procedure requires surgery called a tracheotomy and a varying period of time in the hospital. A tracheotomy provides surgical access to the trachea to allow oxygen to flow into your lungs. You may have to have a tracheotomy in order to be able to use a mechanical ventilator for weeks, months, years, or even the rest of your life. Benefits (1) MV can either assist you to breathe or they can take over breathing for you completely and keep you alive. (2) Your family may feel better knowing that your breathing is being assisted or controlled by MV. Risks (1) Some types of tubes inserted may cause coughing and pain. (2) Infections (pneumonia, for example) may occur as a result of MV for patients who use MV for an extended period of time. Alternatives If you do not choose to have MV, you may not be able to breathe on your own. Lack of oxygen to your brain will cause brain damage that will harm your thinking skills and make your quality of life worse. Eventually, if you do not begin to breathe on your own, you will die.Ummm.... Helps maintain quality of life? Tracheotomy? The 'alternative' to mechanical ventilation basically says you won't be able to breathe and die. They might as well have said 'YOU WILL SUFFOCATE AND DIE A HORRIBLE DEATH.' I have to admit I'm perplexed by the content of this enhanced information, and still sit here wondering if there's something here I'm missing. Was this an excerpt? Seems like saying 'they hook you up to the breathing machine like in the movies' would have been equally illuminating.... (Source: Pallimed: A Hospice & Palliative Medicine Blog)

Race and end-of-life care in jags

Pallimed: A Hospice & Palliative Medicine Blog — Thu, 02 Oct 2008 04:00:00 +0100

Two from JAGS on race and end-of-life care (see next post for the second)....First is an attempt to understand why there are long-standing and persistent racial differences regarding advance care planning and hospice utilization in the US. The study involved older (over 65 years) primary care clinic patients from a single center who were asked a variety of questions about values regarding end of life care and beliefs/attitudes about advance directives and hospice care. ~200 subjects in all; unfortunately only a ~third of eligible subjects participated, making one wonder how much that skews the results.Besides measuring advance directive completion, they measured (using a variety of scales) attitudes and beliefs about end of life care including about hospice care, treatment preferences at the end of life, spirituality, health care system mis/trust, and beliefs about advance care planning. Consistent with prior studies, African Americans were less likely than white Americans to have advance directives, more skeptical of hospice care, had somewhat more distrust towards the health care system, and were more likely to endorse life-prolonging therapies in the setting of a terminal illness. Controlling for all these findings, they more or less found that it was the aggregate of these cultural values/beliefs that predicted less advance care planning use and skepticism towards hospice and not race per se.The flip side of that is that African American 'race' in this and prior studies is likely just a proxy for a set of beliefs and values which are more prominent in African Americans than white Americans (although individuals within each group share the full spectrum of those beliefs/values). All fine and good, but what is really interesting about this paper is that in the discussion section the authors deliberately try to move the discussion away from suggesting that it's a 'problem' (as in a health care system/racism/policy/etc. problem) that African Americans as a group use advance directives and hospice care less - that that's more the product of deep-seated cultural values - and that the challenge to the medical community as a whole is to find more culturally appropriate ways to deliver good end of life care to African Americans. A quote:This work has implications for the development of culturally competent policies and programs that may improve end-of-life care. In this study, African Americans were less comfortable discussing death, more likely to want life-prolonging therapies, and more likely to agree that those who believe in God do not have to plan for end-of-life care; these factors partly explained the relationship between race and possession of an advance directive. Although interventions in church or community settings have increased dialogue about and comfort discussing end-of-life care, many of these programs have not increased the number of African Americans completing advance directives. This is not surprising, because they only partly address potential cultural barriers. Furthermore, given the lack of data supporting the effectiveness of advance directives in improving end-of-life care and the cultural beliefs identified in this study and others, emphasis on the process of advance care planning rather than the completion of documents seems more likely to result in the desired outcome—opportunities for those who want to do so to express their preferences for end-of-life care should they become incapacitated. For African Americans, in addition to community and church-based discussions, culturally sensitive advance care planning should consider the importance of family in decision-making and the value of informal ways of expressing preferences, including oral and written instructions or even deferral of decisions to family, and greater emphasis on understanding and respecting preferences for care, whatever they are and however they are expressed in the context of patients' values and goals.Rebecca S. Allen, Jessica Y. Allen, Michelle M. Hilgeman, Jamie DeCoster (2008). End-of-Life Decision-Making, Decisional Conflict, and Enhanced Information: Race Effects Journal of the American Geriatrics Society, 56 (10), 1904-1909 DOI: 10.1111/j.1532-5415.2008.01929.x (Source: Pallimed: A Hospice & Palliative Medicine Blog)

'suicide by advance directive'

Pallimed: A Hospice & Palliative Medicine Blog — Mon, 29 Sep 2008 04:00:00 +0100

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. None of this is to criticize the paper itself as it contains a really good discussion about decision-making in patients who have 'nearly' committed suicide and families and doctors are faced with the agonizing decision of what to do - maintain a patient in a permanently disabled state (which may be an affront to a patient's dignity) or let them 'complete' their suicide. Cases like these come up for my time at least once or twice a year. My own feeling is that, assuming the prognosis is relatively firm, if a patient's loved ones/decision makers support the idea that the patient would never want to be maintained in such a state (no matter how they got there - car crash, cardiac arrest, suicide attempt) it is certainly appropriate to stop life-prolonging treatments. J Med Ethics also has a discussion about DNR orders, warning about them being over-interpreted and misapplied (e.g. interpreting them to mean no intubation under any circumstances when the order really is supposed to mean no intubation - and other advanced life support measures - in the case of a cardiopulmonary arrest). These are well-established concerns of course and what's new here (at least to me) is their proposal of having "No chest compression" orders instead of 'DNR' orders for those patients who could benefit from/would want many 'aggressive' treatments in non-arrest situations. It's not a bad idea by itself (although inevitably then you'd get people worrying it means they should intubate a patient who has arrested but not give them chest compressions), but it seems that what institutions really need are policies and forms which parse out the different scenarios reasonably (e.g. elective intubation for pneumonia OK, but no resuscitative efforts for an arrest, etc.) without creating a menu-check-box system which will encourage residents to ask patients 30 questions along the lines of "If your heart stops do you want chest compressions? If your heart stops do you want electric shocks? If your blood pressure is low do you want medications to raise it?" - without them actually having a conversation about prognosis and goals. (Source: Pallimed: A Hospice & Palliative Medicine Blog)

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Do not resuscitate color confusion

Pallimed: A Hospice & Palliative Medicine Blog — Mon, 29 Sep 2008 04:00:00 +0100

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 canfound confound a plan. I have seen doctors write "AND" as an order but I truly think this causes more confusion unless there is a set policy about what this means at one's hospital. If you want a gentleThe 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. (Source: Pallimed: A Hospice & Palliative Medicine Blog)

Does a dead person's vote count?

Pallimed: A Hospice & Palliative Medicine Blog — Fri, 26 Sep 2008 04:00:00 +0100

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.If you have more questions, I will try to answer them the best I can, please post them in the comments.States AllowingEarly (Absentee/In-person) Votes Cast by a Living Person Before Election Day Who Dies Before Election DayCaliforniaMontanaFloridaOhioOregonTexasTennesseeWashingtonWest VirginiaStates ForbiddingEarly (Absentee/In-person) Votes Cast by a Living Person Before Election Day Who Dies Before Election DayColoradoIdahoKentuckyMinnesotaNorth CarolinaSouth DakotaStates with Unknown Approach** * Alabama* Alaska* American Samoa* Arizona* Arkansas* Connecticut* Delaware* District of Columbia* Georgia* Guam* Hawaii* Illinois* Indiana* Iowa* Kansas* Louisiana* Maine* Maryland* Massachusetts* Michigan* Mississippi* Nebraska* Nevada* New Hampshire* New Jersey* New Mexico* New York* North Dakota* Northern Marianas Islands* Oklahoma* Pennsylvania* Puerto Rico* Rhode Island* South Carolina* Utah* Vermont* Virginia* Virgin Islands* Washington* Wisconsin* Wyoming**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. (Source: Pallimed: A Hospice & Palliative Medicine Blog)

Physician - patient disagreement about performance status

Pallimed: A Hospice & Palliative Medicine Blog — Fri, 26 Sep 2008 04:00:00 +0100

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?Patients had a median survival of ~9 months. About 60% of patients 'disagreed' with their physician's assessment of their performance status; overall physicians overestimated patients' function. However, patients with the worse physician-rated functional status were more likely to rate their function as being better. Disagreement in functional status was associated with poorer prognosis (by ~1-2 months) and this survived multivariate analysis at least for Karnofsky (they adjusted for age, sex, work status, and depression). I couldn't find anything in the paper to dissuade me that what was happening was that the patients' assessment of their functional status was likely more accurate than physicians' and that since overall patients swung more pessimistically than physicians, those patients with divergent assessments of functional status tended to be, in fact, sicker and so had a worse prognosis. Anyway, it raised the question for me of how we actually go about assessing performance status? How are people trained in doing this? Are there evidenced based ways of assessing it that we should all be adopting? My training in it, while decent I think (I hope!), was relatively informal.... (Source: Pallimed: A Hospice & Palliative Medicine Blog)

Prognosis in cirrhosis and chf

Pallimed: A Hospice & Palliative Medicine Blog — Wed, 24 Sep 2008 04:00:00 +0100

A couple from the NEJM that will be of interest to the prognosis-completists out there at least:1)First is a paper looking at hyponatremia and early mortality (within 90 days) of being listed for a liver transplant. Hyponatremia was associated with increased mortality and the major point of the article is to make an argument that hyponatremia should be added to the MELD score when deciding organ allocation. It's an interesting discussion of hyponatremia and prognosis in liver disease (which is continued in the accompanying editorial) however the data here are not the type you can apply to bedside prognostication (patient X has a Y% 3 month prognosis etc.). 2)There's also a look at the prognostic importance of defibrillator shocks in patients with CHF who had ICDs placed for primary prevention (ie - patients who had no known history of life-threatening ventricular arrhythmias). Basically: yes shocks do predict a worse prognosis (hazard ratio in the ballpark of ~5 depending on which specific analysis they did), but prognosis remained pretty good across the cohort (1 year survival was ~82% for those patients who received a shock). For those of you who collect prognostic data, the paper has lots more of it, but - like the hyponatremia article above - this is not necessarily information that's helpful to bring to the bedside. (Source: Pallimed: A Hospice & Palliative Medicine Blog)

Palliative medicine! genius! thank you!

Pallimed: A Hospice & Palliative Medicine Blog — Wed, 24 Sep 2008 04:00:00 +0100

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 (Source: Pallimed: A Hospice & Palliative Medicine Blog)

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Hospice and palliative care advocacy

Pallimed: A Hospice & Palliative Medicine Blog — Wed, 24 Sep 2008 04:00:00 +0100

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 (Source: Pallimed: A Hospice & Palliative Medicine Blog)

Last 24 hours illustration

Death Maiden — Tue, 23 Sep 2008 01:10:00 +0100

Sorry for the long silence on this blog. I have been spending my time off-line drawing comics as a new creative outlet, which has taken up the time I used to spend writing this blog. Lately, I have been starting to draw illustrations pertaining to the end-of-life and I thought it would be appropriate to start posting these on this blog. Definitely a change of pace from this blog's former content. (Source: Death Maiden)

Revisiting the effectiveness of palliative care

Pallimed: A Hospice & Palliative Medicine Blog — Mon, 22 Sep 2008 04:00:00 +0100

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. Much of the criticism concerns trial selection and how many of the trials included in the analysis involve services which aren't consistent with current definitions of palliative care. There is also a discussion of whether it's appropriate to exclude non-randomized trials as many of the best studies have not been randomized trials. I also think some of disagreement derives from the use of language such as 'no evidence' - I know we keep on bringing this up on the blog but if you look there are spats all the time over people using that term meaning an absence of quality evidence one way or the other and people interpreting it as meaning there is good evidence that something actually is ineffective. Anyway, my favorite point was from the 2nd letter: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. (Source: Pallimed: A Hospice & Palliative Medicine Blog)

Jama on medicine and spirituality

Pallimed: A Hospice & Palliative Medicine Blog — Mon, 22 Sep 2008 04:00:00 +0100

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.... (Source: Pallimed: A Hospice & Palliative Medicine Blog)

Prognosis after neph tubes

Pallimed: A Hospice & Palliative Medicine Blog — Mon, 22 Sep 2008 04:00:00 +0100

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). Median survival was 96 days with 1, 6, and 12 month survivals 78%, 30%, and 12% respectively. They also created a multivariate model to create a sort of mortality risk index: low albumin, low-grade hydronephrosis, and having lots of metastases all predicted worse outcomes. Why low-grade hydronephrosis was independently associated with worse outcomes (as opposed to high-grade) I don't know and the authors don't speculate.I'm assuming there is some body of literature out there on prognosis and outcomes with neph tube insertion, although this is the first I've seen of it, and it's certainly important data to know. It's always tough to know how to generalize data from other countries, but looking at the demographic/patient information data in this paper, these are very familiar patients to me, and, at least as far as survival in advanced cancer goes, there's very little any of us can do anywhere that has a major impact on longevity and I plan on treating these findings as generally applicable to my patients.Christian, as our in-house prognostication guy, I'll let you contradict me here but I think most of us conceptualize prognosis is advanced cancer in two ways: one is looking at performance status/ECOG score/etc. and the other is looking for the presence or absence of 'sentinel' indicators of poor prognosis (e.g. hypercalemia, presence of a malignant pleural effusion, etc.). I'm adding obstructive nephropathy/neph tube placement to the list as well. (Source: Pallimed: A Hospice & Palliative Medicine Blog)

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Pallimed: A Hospice & Palliative Medicine Blog — Fri, 19 Sep 2008 04:00:00 +0100

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. (Source: Pallimed: A Hospice & Palliative Medicine Blog)

Pal-pourri

Pallimed: A Hospice & Palliative Medicine Blog — Fri, 19 Sep 2008 04:00:00 +0100

MORPHINE = MED-XA 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 DOCUMENTARYHospice 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.BAD HEADLINEThanks 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 BREAKERA 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? (Source: Pallimed: A Hospice & Palliative Medicine Blog)

Wikipedia and palliative medicine: a call to arms

Pallimed: A Hospice & Palliative Medicine Blog — Fri, 19 Sep 2008 04:00:00 +0100

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 incPalliative 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.etc., etc.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! (Source: Pallimed: A Hospice & Palliative Medicine Blog)

Outcome in severe head injuries in the elderly

Pallimed: A Hospice & Palliative Medicine Blog — Wed, 17 Sep 2008 04:00:00 +0100

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. (Source: Pallimed: A Hospice & Palliative Medicine Blog)

Review of cancer fatigue therapy

Pallimed: A Hospice & Palliative Medicine Blog — Wed, 17 Sep 2008 04:00:00 +0100

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.) I didn't stop using methylphenidate when the negative trial came out: not because I didn't believe the study results but because I had enough patients who responded/benefited (even if it was a placebo effect) that I chalked up the negative findings to the fact that many patients don't respond at all, and for many who do the effect is modest. That said, it's nice to see that perhaps the door wasn't shut on methylphenidate, as trite as that can sound based on a metaanalysis of two trials! (Source: Pallimed: A Hospice & Palliative Medicine Blog)

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Titrating guidance

Pallimed: A Hospice & Palliative Medicine Blog — Wed, 17 Sep 2008 04:00:00 +0100

...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. (Source: Pallimed: A Hospice & Palliative Medicine Blog)

How we break bad news

Pallimed: A Hospice & Palliative Medicine Blog — Wed, 17 Sep 2008 04:00:00 +0100

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.There's nothing you can do about (1). (2) however suggests a deficit in our pedagogy. Part of it is that even if the 'breaking bad news session' goes 'by the book' and is a linear process with a single element of 'bad news' in the setting of a patient-physician dyad it may still be (?should be) emotionally difficult and perhaps what we're not doing is preparing these young physicians for the emotional aspect of this. One of my most prominent teaching points when I do this is that emotions are OK, patients/families will be emotional, them reacting strongly to hearing life-altering news is perfectly fine and healthy (wouldn't you?), and the point of BBN 'well' is not to prevent emotions from happening. Emotions will happen. It's to 1) not make things worse by being an ass/confusing/overwhelming/distant and 2) to actually deepen a trusting doctor-patient-family relationship (particularly as that's sometimes all we've got to offer someone - a promise that we'll be there and we'll try). And if we're not preparing trainees for making it through the emotionality of these interactions then we're not teaching them anything.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!**I've been having deja vu as I read this article and write this post - as if I've written about it before: I searched the blog and can't find a post about this one from me, Christian, or Tom - but if we have posted on this before I'm sorry. It's a weird feeling...and for the curious out there I'd highly recommend this To the Best of Our Knowledge segment (a public radio program) on deja vu - especially the first 10 minutes. (Source: Pallimed: A Hospice & Palliative Medicine Blog)

Bills introduced to stop the rate cut

Hospice Blog — Mon, 15 Sep 2008 15:56:00 +0100

Bills have been introduced in both the House and Senate to stop the Medicare hospice rate cuts. Follow the link to find out the history of the rate cuts, who sponsored the bills, what the bill actually does, and (most importantly) what you NEED to do to support this legislation. Time is very short to make this happen!update:Here is the text from the Senate floor when the bill was introduced.Here is the text from the House. (Source: Hospice Blog)

More palliative medicine blogs!

Pallimed: A Hospice & Palliative Medicine Blog — Mon, 15 Sep 2008 04:00:00 +0100

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.)Frequently Updated Hospice & Palliative Medicine Blogs (in order of age of blog)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)This list can also be found in the right hand column.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. (Source: Pallimed: A Hospice & Palliative Medicine Blog)

Medicare hospice protection act of 2008

Pallimed: A Hospice & Palliative Medicine Blog — Mon, 15 Sep 2008 04:00:00 +0100

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 agenciesCosts for hospice care are increasing (gas, nurse salaries, insurance premiums)I guess Pat Roberts (R-Kan) got my email, because he is one of the sponsoring senators. So as you can see one person CAN make a difference*, so in this political season, get off your grassroots and make some noise!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. (Source: Pallimed: A Hospice & Palliative Medicine Blog)

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Ethnic differences in advance care planning

Pallimed: A Hospice & Palliative Medicine Blog — Thu, 11 Sep 2008 04:00:00 +0100

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. There has been a flurry of good research recently on racial/ethnic differences in end of life care, and I have to say that it's very confusing and seemingly contradictory, which is probably OK, as it's a very complex topic that I don't begin to understand. Compare these findings to, for instance, Angelo Volandes' research on videos in advance care planning (here and here). (Source: Pallimed: A Hospice & Palliative Medicine Blog)

Meta-analysis of palliative radiation for lung cancer

Pallimed: A Hospice & Palliative Medicine Blog — Thu, 11 Sep 2008 04:00:00 +0100

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.). The same issue has a hilarious Art of Oncology piece about 'the difficult patient.' Short, touching, and worth a read, and I practically choked on my apple when the author mentioned this 'nightmare' patient getting a tattoo while neutropenic. (Source: Pallimed: A Hospice & Palliative Medicine Blog)

Cost-savings of pc teams

Pallimed: A Hospice & Palliative Medicine Blog — Thu, 11 Sep 2008 04:00:00 +0100

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.' One could still argue that those patients, due to their goals, would have 'gone palliative' even without specialist PC services and those costs would have dropped off anyway, but, jeez, the only way to put that one to rest is an actual randomized trial of PC services which is not going to happen. And those of us who do this I think can attest that we frequently are called not because goals of care are clear and all the decisions to be made are made and the treatment limitations are enacted but we are called because the goals aren't clear, the treatment options/decisions haven't been decided, and patients, families, and their doctors are looking for help as to what to do. I personally am convinced by the data and doubt there will be better data coming about cost-savings for a while (unless it's a similarly designed but larger trial - although hell - when was the last time you saw a palliative care study involving over 20,000 patients?). However there is always room for hand-wringing and nay-saying!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? (The same issue also has a look at what end-of-life 'services' are provided for patients dying in Belgium.) (Source: Pallimed: A Hospice & Palliative Medicine Blog)

Nhpco files suit against medicare

Hospice Blog — Mon, 08 Sep 2008 16:58:00 +0100

The National Hospice and Palliative Care Organization is suing Medicare to stop the rate increase.Guess that will silence all the people who have complained over the years that NHPCO wasn't aggressive enough. Personally, I'm not sure that they haven't been too aggressive in this instance, but I don't really know enough about the inner working of the process or the lawsuit to know for sure. I hope it turns out well, and assume NHPCO thinks they have a good shot at winning or they wouldn't have picked this fight. (Source: Hospice Blog)

Constipation: iv vs oral morphine

Pallimed: A Hospice & Palliative Medicine Blog — Fri, 05 Sep 2008 04:00:00 +0100

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.This is the first published description I have seen of this phenomenon, although I heard it described years ago. This is one of those mysteries of individual patient response to opioids. These authors (as did my first informant years ago) suggest that it is related to mu receptors in the gut. That makes a lot of sense at first blush and is reinforced by the observation that transdermal fentanyl seems to cause less constipation than oral morphine. Oral methadone is also reputed to cause less constipation. These authors propose that methadone's wide and rapid distribution may be responsible: the mu receptors in the gut are perhaps not "bathed" in opioid for as long as with morphine. I have no argument with the observed phenomena, but herewith are my musings on pharmacokinetics and dynamics. Once steady state is reached, isn't there a constant rate of "bathing" of the receptors, where ever they may be? I would guess that most of the oral dose of any opioid is absorbed into the blood stream long before it gets to the large intestine, which is where constipation is produced. We can certainly pick up opioid concentrations in the urine; how much ends up in stool? Unlike most opioids, more methadone is eliminated via the gut than the kidneys; how does that fit into the "receptor bathing" hypothesis? How much of opioid-induced constipation is at the individual patient level and how much is inherent in specific drugs? I have had patients on quite high doses of opioids who do not have a problem with constipation. More than one has reported something like: "as long as I have my morning cup of coffee, I'm fine, just like before I started this (opioid)." Patients at highest risk for opioid-induced constipation are those who had a problem with chronic constipation prior to opioid use. Those who "hate to take pills" are hard to convince to stay on their bowel regimen and end up with both pain and constipation.A semi-related issue: Mu receptors have been identified in peripheral tissues and are reported to be expressed in larger numbers in damaged tissues. This is the basis for the use of topical opioids. If methylnaltrexone works only in the periphery, because it doesn't cross the blood-brain barrier, should we expect to see transient increases in certain kinds of pain--surface wounds, pressure ulcers, fungating tumors--when methylnaltrexone is administered? The vast majority of patients experience constipation on any opioid by any route. Our practice should be to prescribe stimulant laxatives for every patient who can take oral medications, then back off if not needed.Reference: Mazumdar A, Mishra S, Bhatnagar S, Gupta D. Intravenous morphine can avoid distressing constipation associated with oral morphine: a retrospective analysis of our experience in 11 patients in the palliative care in-patient unit. Am J Hosp Palliat Care. 2008 Aug-Sep;25(4):282-4 (Source: Pallimed: A Hospice & Palliative Medicine Blog)

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Medications and driving - informed consent?

Pallimed: A Hospice & Palliative Medicine Blog — Fri, 05 Sep 2008 04:00:00 +0100

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?I am not saying the medical community should have no role , but what is reasonable, and what is effective in preventing horrible tragedies such as these two cases? Taking away driving privileges has always been a source for consternation in families and in the medical community and there is no simple rule or guideline to follow. Does anyone have a good journal article to help clarify the role of the medical professional in discussing driving responsibilities with patients? (Source: Pallimed: A Hospice & Palliative Medicine Blog)

Stories of a hospice nurse

Hospice Blog — Thu, 04 Sep 2008 16:09:00 +0100

I was recently introduced to a blog written by a full-time hospice on-call nurse, and wanted to point you to one of her stories. I spend most of my time talking about the business of hospice, but we should never forget how hard hospice is. Everyone understands that we work with death and dying everyday, but what many don't remember is the fact that we work with families who are under great stress. The best of families show some dysfunction during these types of hard times, so just imagine what happens when you put a dysfunctional family under stress.Check out these two links (1 and 2) to read a rather tame example! (Source: Hospice Blog)

Switching to long-acting morphine, sorta

Pallimed: A Hospice & Palliative Medicine Blog — Tue, 02 Sep 2008 04:00:00 +0100

Pain Medicine has a trial looking at cognitive changes when transitioning chronic non-malignant pain patients from short-acting to long-acting opioids. It involved ~120 adults on short acting opioids (over 80% were on 60mg/day of oral morphine equivalents or less) who were transitioned to approximately equivalent doses of sustained-release morphine (once daily formulation). (Curiously, methadone was treated as a short acting opioid in this study.) They looked at pain, depressive symptoms, and cognitive function (using things like the digit span test) before and after the rotation to once-daily morphine and found that everything got a little better (pain/depressive symptoms) or stayed the same (cognitive functioning). So hooray for once daily morphine.The problem however is that ~40 patients were deemed 'non-evaluable' (yes, a 3rd of the cohort!) and the outcomes were only presented for those 'evaluable' patients (and it's unclear what happened to those non-evaluable patients or why they were non-evaluable): so the message is I guess that your opioid-tolerant patients who tolerate/go along with 1 month of a rotation to once-daily morphine...well, that they tolerate once-daily morphine.This was an industry-sponsored study which didn't really go into why they 'lost' a third of their study group (which happens sometimes we all realize but not even telling us why/how really makes you question everything about the study). Especially since the world doesn't necessarily need more proof that many opioid-tolerant patients tolerate opioids (!) - but understanding more about how/why some patients do not tolerate a switch to equivalent doses of a long-acting morphine - that's something we do need to understand better. (Source: Pallimed: A Hospice & Palliative Medicine Blog)

Furosemide for hypercalcemia for nerds

Pallimed: A Hospice & Palliative Medicine Blog — Tue, 02 Sep 2008 04:00:00 +0100

Annals of Internal Medicine has a narrative review of the use of furosemide for hypercalcemia, a syndrome which is unfortunately not uncommon in advanced cancer patients. Its conclusion is straight-forward: it has no role in the treatment of hypercalcemia (which should instead be saline hydration, bisphosphonates, +/- calcitonin). Towards the end of it there are some philosophical remarks about evidence:We show that despite more than 20 years of careful phase I to III research supporting saline hydration with bisphosphonates as the preferred first-line therapy in hypercalcemia and the lack of significant supporting evidence for furosemide, this medication continues to be routinely recommended for emergency management. As recently as 2005, a review recommended 20 to 40 mg of furosemide after adequate hydration; the author acknowledged that this was based on "historical precedent and common practice." Reliance on historical precedent is not limited solely to the management of hypercalcemia; many therapies have become habit, often without supporting evidence. We may not know where such a habit came from and may struggle to find its origin; however, that search may be informative and practice-changing. Such a search may have several possible outcomes: No evidence is found to support the current recommendations, leading to a new standard of care; limited but supporting evidence is found that argues for additional studies; or adequate evidence is found to support the existing precedent. We argue that our search of furosemide studies is an example of the first outcome.To clarify the 'no evidence' language here - what is actually being talked about is that there is some evidence directly supporting the idea that furosemide is not very effective (as opposed to there just being an absence of data/research) plus solid evidence for an effective alternate therapy. This is the perennial Cochrane lament (I imagine the plaintive moaning of a loon) a la this post, and why it's important to clarify, at least for the nerds writing this blog, whether one is talking about an absence of research data or research findings with negative conclusions.Annals also has a brief, chatty, practical look at navigating language barriers in difficult clinical circumstances. It is, perhaps, a little too brief, and does not specifically address end of life concerns, but would be an OK one for the teaching file, especially for medical students and interns. (Source: Pallimed: A Hospice & Palliative Medicine Blog)

Nejm on dcd

Pallimed: A Hospice & Palliative Medicine Blog — Tue, 02 Sep 2008 04:00:00 +0100

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): 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.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):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. (Source: Pallimed: A Hospice & Palliative Medicine Blog)

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Shaping the minds of america’s youth

Hospice Blog — Mon, 01 Sep 2008 14:13:00 +0100

In my last post I said, "It is not an overstatement to say that we are reaching the goal of changing the way our nation views and faces the end of life." Now, I have proof.The Beloit College Mindset List, which is "a look at the cultural touchstones that shape the lives of students entering college", has provided me with my proof. I found the list very interesting since it is full of pearls of wisdom such as, "For these students, Sammy Davis Jr., Jim Henson, Ryan White, Stevie Ray Vaughan and Freddy Krueger have always been dead." If you want to feel old, you should read the whole list.The part that makes this list news on hospice blog is that the list reports that, "All have had a relative--or known about a friend's relative--who died comfortably at home with Hospice." Think about that for a moment – according to this list, every incoming college freshman this year has either had a personal hospice experience or has a friend that has. Every college freshman has somewhere in their mind that dying at home with hospice is at least an option and may even think it is the norm. We've come a long way baby!This revelation puts into focus the fact that the hospice movement has accomplished its biggest goal. There is no turning back. Dying at home is part of the American experience. Our focus now must be on the dying comfortably at home part, and that is why I've been on my soapbox about how all hospices must start preparing for the government (our largest payor source) to treat us like a business. The "hospice movement" has accomplished its goal. We are now just hospice – not a movement. We cost Medicare quite a bit of money. (We also save them quite a bit, but that's beside the point here.) The American people now expect us to be here. The newness is wearing off. All of this is something to celebrate, and something that the hospice pioneers should feel an immense amount of pride about.We've arrived! Now we must fight to keep this movement from becoming just another method of healthcare delivery. Is our next generation of hospice leaders ready to step up to that challenge?(Once again thanks to the National Hospice and Palliative Care Association for bringing the Beloit College Mindset List to the attention of me and all of their members.) (Source: Hospice Blog)

Simulating pain crisis

Pallimed: A Hospice & Palliative Medicine Blog — Sun, 31 Aug 2008 04:00:00 +0100

There is an interesting pair of studies in Quality Management in Health Care on the use of a simple Microsoft Excel-based simulation tool for teaching medical residents to manage pain crisis in cancer inpatients. The authors had previously determined through surveys of residents and nurses that residents were unprepared for and uncomfortable with managing pain with opioids. Specifically, they were afraid of respiratory depression, especially with escalating doses and long-acting opioids, and had no preparation for converting to other routes or drugs. The informal practice was to manage all cancer pain with intermittent short-acting opioids. The result was that patients complained of uneven pain control marked by "peaks & valleys" and that average pain scores actually increased among hospitalized cancer patients. Not surprisingly, patients, residents and nurses were dissatisfied with pain management. Outcomes, by the way, were unchanged following standard educational interventions such as grand rounds presentations. The authors then developed a "case-based Microsoft Excel program with an interface from which the user selects from a list of medications, orders a dose, and chooses a follow-up interval to assess pain response." Cases are based on 15 actual patients who had been admitted for treatment of pain exacerbation. All opioids, doses, and times given, and pain score responses for these patients were entered. I'm unclear as to what happened next [I'm not a math or computer guy]. Noting that "patients did not respond the same to any given dose of narcotic" [the grinding teeth you hear are mine] they somehow, using a variety of sources, derived a range of "sensitivities of response to equivalent morphine doses." Operationally, they applied a random number generator to select a sensitivity to each starting dose applied to each patient. One hundred sensitivities are possible. Applied to the 15 patients, this translates to 1500 different cases.The interface provides a dose-response curve that shows the user what happened when a dose was administered in a particular case. If the user chooses a reassessment interval that is too long, the graph may trend back up into higher pain scores. The graph above shows one possible dose-response curve for a single dose of opioid. As the case develops, the curve reflects response to all doses over time (48 hours in this study).Principles of care taught didactically, then reinforced by simulator (Goal: rapid induction of pain relief):morphine is the default opioid (ok, so I translated the archaic "narcotic" to the preferred modern term)do not define a specific starting dose; instead, assess, start low, rapidly titrate using early close follow up to each doseuse standard conversion tablereassess every 30 - 60 minutes during titrationconvert to long-acting opioid as soon as possible ("early in care") to stabilize pain and medication regimenuse 8-hour intervals for long-acting agentsI won't go into the details, but they tested the simulator against seven actual patients admitted solely for pain control and found that the pre-determined dose-responses programmed into the simulator included those exhibited by the patients. In a pilot study 31 residents completed 2-3 simulations. Results were independently evaluated by 7 reviewers. The finding was that 90% of the residents improved their pain care. A follow up study (the 2nd article) of several small groups of residents entering their oncology rotation showed that, after simulator training, pain scores--of actual patients they cared for on the oncology unit--decreased (over the first 48 hours after admission for pain control), more patients were prescribed long acting agents, and less naloxone was used. We have known for many years that providing information alone, and that teaching skills such as safe opioid conversion, does not translate into improved pain control. Even a standard case-based approach is not "real" enough for clinicians to apply the critical thinking and get the feedback they need in order to overcome the endemic fear these drugs evoke. The approach these articles describe is a relatively simple, relatively inexpensive intervention that allows barriers to be broken down in a safe environment. It wasn't always clear when the authors were describing intravenous vs oral medication administration. But if the reassessment interval for intravenous and oral opioids was the same (30-60 minutes), the patient receiving the intravenous medication is potentially left in unnecessary pain long after the peak effectiveness could have been assessed. In the first article the authors stated that nurses and residents are the primary care providers for patients on the oncology unit. There was no description of the clinical role that nurses played in the care of patients in pain. It is pretty clear to most of us that "the team" needs to include the bedside nurse. The early reassessment of intravenous opioid administration is surely part of the nursing role.References:1. Harting B, Hasler S, Abrams R, Odwazny R, McNutt R. Computer-based simulation as a teaching tool for residents treating patients with cancer-related pain crises. Qual Manag Health Care. 2008 Jul-Sep;17(3):192-9.2. Harting B, Abrams R, Hasler S, Odwazny R, McNutt R. Effects of training on a simulator of pain care on the quality of pain care for patients with cancer-related pain. Qual Manag Health Care. 2008 Jul-Sep;17(3):200-3. (Source: Pallimed: A Hospice & Palliative Medicine Blog)