Pallimed: A Hospice & Palliative Medicine Blog

AAHPM October Board Meeting Review

2009-11-03T00:15:00.002-06:00

A few weeks have passed since I went to the Fall board meeting for the AAHPM and I wanted to report back to everyone. I don't think this has ever been done from an insiders perspective and when I thought of running to be on the board, frankly I wasn't quite sure what actually being on the board entailed. So this is my attempt to pull the curtain back and invite Pallimed readers in on the process. For the official report on board actions you can check out your AAHPM e-news from November 1 in your email inbox.

First off, thank you very much to the few people who emailed me with comments and questions to bring up during the board meeting. Most of the questions given to me before the meeting were about a getting feedback on salary/workload issues for physicians in palliative care, hospice or a hybrid position. I will say the board approved part of the budget to support to get a professionally administered survey done and published before the end of 2010, so this information should be coming very soon. BUT ONLY IF YOU FILL OUT THE SURVEY!

Interestingly, 'palliative medicine salary' or some similar phrasing is often in the top 10 searches that land on Pallimed, even though we do not have a ton of information here about it. Many will recall a recent attempt (2007?/2008?) to get salary information via standardized MGMA survey, but so few were turned in that the information was not credible. One big factor was the complexity of filling out a non-customized survey that did not accurately reflect variations in palliative care/hospice job responsibilities. The only other publicly available salary report I am aware of is from Tim Cousounis from DAI Palliative Care Group was offering several months ago.

The meeting was a lot of business mixed in with a little bit of creativity and some thought provoking discussions. Instead of meeting in a traditional location, the Board held it's Thursday evening session at a Cooking School. The first part of the evening was focused on looking at emerging trends for our field and society. This 'generative' session provided a good foundation for interesting discussions about social media, trust in media, government and organizations/medical societies. For me it was especially fun since I was able to present on social media to the group. I have posted my presentation to Slideshare if you are interested in my thoughts on this digital revolution. (I plan on posting more here about themes from that presentation in the next few weeks here.)

While the Viking Cooking School was not your typical place for a board meeting I do think the presentations followed by a team building exercise and enough time for informal discussion led to a more productive next day which was much more focused on the important strategic business decisions for the Academy. Overall I thought it was a good environment for the members of the board and executive committee get to know each other outside of 'motions to approve' and 'I second' types of conversation. It was a real treat to talk to many smart and accomplished leaders in our field and I had some very interesting discussions about the past and future of our field and some of the political issues in health care today.

The next day the Board Members met at the AAHPM offices and the large focus was discussing budgetary issues. I have to say I am very impressed with the financial foundation the AAHPM has at this time. Sound investment strategies and strong growth in membership has allowed the Academy to maintain a good balance when other medical associations are having difficulties. The reserves have grown steadily and should provide a solid cushion for many years to come regardless of the environment of the financial markets.

The funniest part of the trip was when my 3.5 year old son ate a dog treat at Steve Smith's house (AAHPM CEO). He lives less than a mile from where my Aunt lives and where we were staying during the trip. Small world.

Overall my first 6 months on the board have taught me the many responsibilities of the AAHPM staff and board of directors. There are so many activities the Academy participates in through a wonderful group of member volunteers. It has really been revealing to see all the successful programs and see the board is really there for oversight and not to control the outcomes. The Academy President, Gail Cooney, would always remind us what was board level oversight and what could be sent back to the various task forces and committees for further refinement. The board really responded well to this which allowed us not to get lost in details best left to those working on the projects.

If you have more questions about what the board does or issues that you think should be raised I would be happy to chat with you. (ctsinclair@gmail.com) If you are not already involved with a task force, SIG or a committee I would love to point you to one that suits your interests.

I am really looking forward to the next 2.5 years of service and hoping that someday some Pallimed readers will join me on the board. Maybe we should nominate Drew next year? Or Lyle?

Also congratulations to the new board members:
Jean Kutner, MD MSPH FAAHPM
John Manfredonia, DO FACOFP FAAHPM
Christine Ritchie, MD MSPH FACP

and our new executives:
President-Elect: Ron Crossno, MD CMD FAAFP FAAHPM
Treasurer: Tim Quill, MD FAAHPM
Secretary: Kate Faulkner, MD FAAHPM

Advance Care Planning Provision Still Alive in Reform

2009-11-02T23:44:00.001-06:00

Image by ~MVI~ via Flickr

In the House version of the Health Care Reform Bill submitted last week, the provision for physician reimbursement once every 5 years for Advance Care Planning (also erroneously known as Death Panels) was kept in. Apparently the sound and the fury of this summer did not deter the Democrats from including it and may have even helped keep it in once all the fire died down. The provision is supported by numerous medical groups including the AAHPM, AMA and even AARP.

I am including the text as copied from HR 3200 here for posterity. (obtained from Opencongress.org) (Sorry for the long post but hey this is history here.)

‘Advance Care Planning Consultation

‘(hhh)(1) Subject to paragraphs (3) and (4), the term ‘advance care planning consultation’ means a consultation between the individual and a practitioner described in paragraph (2) regarding advance care planning, if, subject to paragraph (3), the individual involved has not had such a consultation within the last 5 years. Such consultation shall include the following:

‘(A) An explanation by the practitioner of advance care planning, including key questions and considerations, important steps, and suggested people to talk to.

‘(B) An explanation by the practitioner of advance directives, including living wills and durable powers of attorney, and their uses.

‘(C) An explanation by the practitioner of the role and responsibilities of a health care proxy.

‘(D) The provision by the practitioner of a list of national and State-specific resources to assist consumers and their families with advance care planning, including the national toll-free hotline, the advance care planning clearinghouses, and State legal service organizations (including those funded through the Older Americans Act of 1965).

‘(E) An explanation by the practitioner of the continuum of end-of-life services and supports available, including palliative care and hospice, and benefits for such services and supports that are available under this title.

‘(F)(i) Subject to clause (ii), an explanation of orders regarding life sustaining treatment or similar orders, which shall include--

‘(I) the reasons why the development of such an order is beneficial to the individual and the individual’s family and the individual’s family and thereasons why such an order should be updated periodically as the health of the individual changes;

‘(II) the information needed for an individual or legal surrogate to make informed decisions regarding the completion of such an order; and

‘(III) the identification of resources that an individual may use to determine the requirements of the State in which such individual resides so that the treatment wishes of that individual will be carried out if the individual is unable to communicate those wishes, including requirements regarding the designation of a surrogate decisionmaker (also known as a health care proxy).

‘(ii) The Secretary shall limit the requirement for explanations under clause (i) to consultations furnished in a State--

‘(I) in which all legal barriers have been addressed for enabling orders for life sustaining treatment to constitute a set of medical orders respected across all care settings; and

‘(II) that has in effect a program for orders for life sustaining treatment described in clause (iii).

‘(iii) A program for orders for life sustaining treatment for a States described in this clause is a program that--

‘(I) ensures such orders are standardized and uniquely identifiable throughout the State;

‘(II) distributes or makes accessible such orders to physicians and other health professionals that (acting within the scope of the professional’s authority under State law) may sign orders for life sustaining treatment;

‘(III) provides training for health care professionals across the continuum of care about the goals and use of orders for life sustaining treatment; and

‘(IV) is guided by a coalition of stakeholders includes representatives from emergency medical services, emergency department physicians or nurses, state long-term care association, state medical association, state surveyors, agency responsible for senior services, state department of health, state hospital association, home health association, state bar association, and state hospice association.

‘(2) A practitioner described in this paragraph is--

‘(A) a physician (as defined in subsection (r)(1)); and

‘(B) a nurse practitioner or physician’s assistant who has the authority under State law to sign orders for life sustaining treatments.

‘(3)(A) An initial preventive physical examination under subsection (WW), including any related discussion during such examination, shall not be considered an advance care planning consultation for purposes of applying the 5-year limitation under paragraph (1).

‘(B) An advance care planning consultation with respect to an individual may be conducted more frequently than provided under paragraph (1) if there is a significant change in the health condition of the individual, including diagnosis of a chronic, progressive, life-limiting disease, a life-threatening or terminal diagnosis or life-threatening injury, or upon admission to a skilled nursing facility, a long-term care facility (as defined by the Secretary), or a hospice program.

‘(4) A consultation under this subsection may include the formulation of an order regarding life sustaining treatment or a similar order.

‘(5)(A) For purposes of this section, the term ‘order regarding life sustaining treatment’ means, with respect to an individual, an actionable medical order relating to the treatment of that individual that--

‘(i) is signed and dated by a physician (as defined in subsection (r)(1)) or another health care professional (as specified by the Secretary and who is acting within the scope of the professional’s authority under State law in signing such an order, including a nurse practitioner or physician assistant) and is in a form that permits it to stay with the individual and be followed by health care professionals and providers across the continuum of care;

‘(ii) effectively communicates the individual’s preferences regarding life sustaining treatment, including an indication of the treatment and care desired by the individual;

‘(iii) is uniquely identifiable and standardized within a given locality, region, or State (as identified by the Secretary); and

‘(iv) may incorporate any advance directive (as defined in section 1866(f)(3)) if executed by the individual.

‘(B) The level of treatment indicated under subparagraph (A)(ii) may range from an indication for full treatment to an indication to limit some or all or specified interventions. Such indicated levels of treatment may include indications respecting, among other items--

‘(i) the intensity of medical intervention if the patient is pulse less, apneic, or has serious cardiac or pulmonary problems;

‘(ii) the individual’s desire regarding transfer to a hospital or remaining at the current care setting;

‘(iii) the use of antibiotics; and

‘(iv) the use of artificially administered nutrition and hydration.’.

(2) PAYMENT- Section 1848(j)(3) of such Act (42 U.S.C. 1395w-4(j)(3)) is amended by inserting ‘(2)(FF),’ after ‘(2)(EE),’.

(3) FREQUENCY LIMITATION- Section 1862(a) of such Act (42 U.S.C. 1395y(a)) is amended--

(A) in paragraph (1)--

(i) in subparagraph (N), by striking ‘and’ at the end;

(ii) in subparagraph (O) by striking the semicolon at the end and inserting ‘, and’; and

(iii) by adding at the end the following new subparagraph:

‘(P) in the case of advance care planning consultations (as defined in section 1861(hhh)(1)), which are performed more frequently than is covered under such section;’; and

(B) in paragraph (7), by striking ‘or (K)’ and inserting ‘(K), or (P)’.

(4) EFFECTIVE DATE- The amendments made by this subsection shall apply to consultations furnished on or after January 1, 2011.

(b) Expansion of Physician Quality Reporting Initiative for End of Life Care-

(1) Physician’S QUALITY REPORTING INITIATIVE- Section 1848(k)(2) of the Social Security Act (42 U.S.C. 1395w-4(k)(2)) is amended by adding at the end the following new paragraphs:‘(3subparagraph:

‘(E) Physician’S QUALITY REPORTING INITIATIVE-

‘(Ai) IN GENERAL- For purposes of reporting data on quality measures for covered professional services furnished during 2011 and any subsequent year, to the extent that measures are available, the Secretary shall include quality measures on end of life care and advanced care planning that have been adopted or endorsed by a consensus-based organization, if appropriate. Such measures shall measure both the creation of and adherence to orders for life-sustaining treatment.

‘(Bii) PROPOSED SET OF MEASURES- The Secretary shall publish in the Federal Register proposed quality measures on end of life care and advanced care planning that the Secretary determines are described in subparagraph (A) and would be appropriate for eligible professionals to use to submit data to the Secretary. The Secretary shall provide for a period of public comment on such set of measures before finalizing such proposed measures.’.

(c) Inclusion of Information in Medicare & You Handbook-

(1) MEDICARE & YOU HANDBOOK-

(A) IN GENERAL- Not later than 1 year after the date of the enactment of this Act, the Secretary of Health and Human Services shall update the online version of the Medicare & You Handbook to include the following:

(i) An explanation of advance care planning and advance directives, including--

(I) living wills;

(II) durable power of attorney;

(III) orders of life-sustaining treatment; and

(IV) health care proxies.

(ii) A description of Federal and State resources available to assist individuals and their families with advance care planning and advance directives, including--

(I) available State legal service organizations to assist individuals with advance care planning, including those organizations that receive funding pursuant to the Older Americans Act of 1965 (42 U.S.C. 93001 et seq.);

(II) website links or addresses for State-specific advance directive forms; and

(III) any additional information, as determined by the Secretary.

(B) UPDATE OF PAPER AND SUBSEQUENT VERSIONS- The Secretary shall include the information described in subparagraph (A) in all paper and electronic versions of the Medicare & You Handbook that are published on or after the date that is 1 year after the date of the enactment of this Act.

Dialysis, function, and how you spend your time

2009-10-29T19:33:00.005-05:00

Two related articles on dialysis in older patients, as I alluded to in last week's post:

First is from the NEJM and looks at functional status in older adults residing in nursing homes before and after initiating dialysis. It uses data from the Minimum Data Set and the US Renal Data System, and looks at all ~3700 patients (mean age 73 years, 60% women, 64% white) residing in US NHs 1998-2000 who initiated dialysis while in a NH. They compared functional status (essentially a composite measure of ADLs) before and after dialysis initiation.

Gross survival outcomes are presented: 24, 41, 51, and 58% of patients had died by 3, 6, 9, and 12 months, respectively. (So: worse survival than many metastatic cancers, and being a NH resident and initiating dialysis is almost a hospice-qualifying event, at least by prognostic criteria.)

In addition, most patients' functional status declined, whether or not they survived, and by 12 months only 15% of patients had intact functional status; everyone else was dead or with diminished functional status. With complicated modeling, they indicate that the rate of functional decline increased rapidly just prior to initiating dialysis, leveled off for ~3 months afterwards, then steadily declined again.

(One major caution here - these functional status findings only describe patients who remained in a NH (such that MDS data were available), and so don't include those who were discharged home (the mortality data include everyone initiating dialysis). They note that for the 12 month functional status measurement, they were missing data on over 700 patients, at least some of whom one imagines rehab'd ok and went home with stable if not improved functional status. They do note, without presenting their data, that the results were similar if they assumed all those who went home as having 'maintained' functional status, but it's not clear how many patients this actually represents. I can't imagine the results would be unchanged if it was most of those 700.)

So, as best as can be told, for frail older patients (assuming residence in a NH as a proxy for frailty), initiation of dialysis does not seem to improve quality of life, at least as measured by functional status. This is an important, and thought-provoking finding. As a palliative consultant, I see these patients all the time (frail, older patients, who initiate dialysis and really not much gets better: still weak, still debilitated, lots of catheter/access complications, in and out of acute care settings with infections, pnemonias, and vascular events). I assumed however I was seeing a small, self-selected section of these patients - the minority who don't do well after dialysis initiation - but these data suggest this minority is not small, and is perhaps the norm (again, with the caveat that these are NH residents, and not representative of all 73 year olds who initiate dialysis).

As an aside, I'll also cheer the authors for throwing in this sentence in their discussion about why dialysis might not improve function in most frail older patients: 'Finally, kidney failure may be a reflection of terminal multiorgandysfunction rather than a primary cause of functional decline,and thus the initiation of dialysis may not rescue patientsfrom an inevitable decline.' This 'whole-organism' concept, that death may not just be a result of organ failure (which if it was then presumably one just needs to fix/replace/circumvent those organs and people will be fine), struck me as a bit subversive.

The second paper is from the Clinical Journal of the American Society of Nephrology and tries to compare outcomes between older adults (over 70 years) with ESRD who initiate dialysis and those who don't. It comes from a single institution in the UK, and it should be noted addresses a different population (ie not just NH residents) than the NEJM one.

The study involves comparing patients in this institution's ESRD referral clinic who are 'dialysis-ready' (essentially an estimated glomerular filtration rate of 10.8ml/min or less) who choose to proceed with dialysis vs. those who don't. Those who don't at this institution receive what they call maximum conservative management, which was not strictly controlled in this descriptive study, but per their report commonly involves interventions to maintain adequate serum hemoglobin, loop diuretics, potassium restriction, as well as end of life counseling (why they call this MCM I'm not sure - it just seems like good management of ESRD without dialysis to me - promoting symptom alleviating and modestly life-prolonging treatments - perhaps this is distinction with a strictly symptom alleviating/very conservative approach?).

Patients who received dialysis (n=173, mean age 76 years) were compared with the 29 patients who did not (mean age 82 years). To compare survival after dialysis initiation, they created a model which predicted when the MCM patients 'would have' started dialysis had they chosen to (ie, at the same eGFR as the actual dialysis group), to make the survival comparisons as valid as possible. Despite the age differences, comorbidity (using the Charlson Comorbidity Index) was similar between groups, as were baseline hemoglobin and albumin (two well established prognostic markers in ESRD). It's important however, when reading the results below, that there was nothing controlled or experimental about these data: this is simply a description of what happened to those who sought dialysis vs. those who didn't at this center.

Median survival in the dialysis group was 38 months vs 14 months in the MCM group. The authors also do a variety of analyses to look at how those months were spent in the different group, how they differed, as well as how the different groups died. The MCM group had a far less medicalized last 14 months: 40% died at home or hospice vs. 70% of dialysis patients. Rates of hospitalization were different: 25 days/patient/year in the dialysis group vs. 16 in the MCM. Of most interest, they measured days of 'institutionalization' (essentially days of hospitalization plus days spent receiving hemodialysis - they included HD days as full days with the idea that many of their older patients essentially devote the entire day to HD - transport to and from and receiving HD can take the better part of a day, etc.) between groups. Patients receiving hemodialysis were 173 per patient per year (e.g. 47% of days) vs. 16 (4.3% of days) in the MCM group.

Mashing these findings together, they conclude that for their patients, nearly all of the survival increase with dialysis can be accounted for by days in the hospital or actually receiving dialysis: nearly every day gained by dialysis is a day spent receiving dialysis (or in the hospital with complications of dialysis/other comorbidities). To be fair, they gained probably 3 months of institution free days too, but still a far less gain than the ~2 years when looking strictly at gross survival.

So not a banner day for dialysis in above 70 set. The results speak for themselves, I think, and I'll refer you to some of the links below to better discussions of the palliative care implications of this than I can muster now. The one thing I'll muse about, is what should we be telling our patients? Or, how can we counsel our patients about this? Despite what the death panelists seem to believe, no one out there is going to grab these findings to suggest dialysis shouldn't be offered to older patients (and for those who fear 'socialized medicine,' one should reflect that the 2nd paper, which involved dialysis hundreds of 70+ year olds, involved residents of the UK). However, we should be trying our best to honestly counsel them about the limitations of dialysis: it might not improve your function, it involves a lot of medicalization of what are likely your final few years, etc.

I was talking with some folks the other day about whether it made sense to show patients videos of 'actual' CPR when discussing code status, and we talked about the work of Angelo Volandes who is working on that very thing (see here - the videos aren't available for public viewing as far as I can tell), and I wonder if 'living with frailty and ESRD-HD' might be a good topic for video advance care planning?

Thanks to Dr. Eric Cohen for sharing the CJASN paper with me.
See also Alex Smith's discussion of the NEJM paper at GeriPal, as well as the accompanying editorial in NEJM, both of which more directly discuss the role of palliative care in all this.
Image, Semipermeable Membrane, is from Wikipedia.

Dementia as a terminal illness

2009-10-23T16:06:00.006-05:00

NEJM has an important paper about the natural history of advanced dementia. The data come from a prospective study (2003-7) of patients with advanced dementia residing in 22 nursing homes in the Boston area. 'Advanced' dementia here means patients with a Cognitive Performance Scale (part of the MDS) of 5 or greater. A CPS of 5 corresponds to a mean Mini-Mental State Examination of 5 (+/- 5 SD): ie, the vast majority of these patients then had a MMSE of less than 10. Inclusion criteria also included 'profound cognitive deficits (inability to recognize familymembers), minimal verbal communication, total functional dependence,incontinence of urine and stool, and inability to ambulate independently.'

The data were collected in a variety of ways in the study: after enrollment incident complications were determined by chart review; pain and dyspnea, agitation, and aspiration were determined by regular interviews with the patient's NH care providers and nurses. One of the categories they measured by chart review was 'eating problems' which they defined as: 'documentation of weight loss, swallowingor chewing problems, refusal to eat or drink, suspected dehydration,and persistently reduced oral intake.'

~320 (56% of patients who met the inclusion criteria) were enrolled: mean age 85 years, 89% white, 85% female, most with Alzheimer's-type dementia. The median time subjects had lived in a NH was 3 years.

They present some general survival data, as well as data on 'complications' during the study. Median survival was 478 days, with 54% of patients dying in the 18 month study window, and 25% dying within 6 months. So - a sick group of people - although this doesn't tell you much more since patients were enrolled regardless of how long they had dementia or had lived in a NH.

But things get more interesting. Many patients had dementia associated complications, which were associated with worse prognoses. 41% had pneumonia (leading to a 47% 6 month mortality after an episode of pneumonia), 53% a febrile episode (45% 6 month mortality), and 86% had an eating problem (38% 6 month mortality). These mortality rates were much higher when compared to patients who did not have those 'complications.' In fact the 500 day survival for the (small number of) patients who had no eating problems was over 90%, suggesting to me that eating problems are the hallmark of the 'terminal phase' (exceedingly likely to die within 2 years) of dementia.

Pain, agitation, and dyspnea were all quite common, 'burdensome interventions' (parenteral therapies, hospitalizations, ED visits, tube feeding, etc.) occured in 40% of patients in the 3 months prior to death. Only 30% of patients who died were enrolled in hospice. Which, yes, seems appalling but also reflects the reality that 'hospice-like-care' frequently occurs in NH for patients with dementia without formal hospice enrollment.

Truly appalling was the only 18% of proxies who reported receiving prognostic information from a physician, and only 32% reported receiving counseling about the expected complications of advanced dementia. Breaks your heart. Despite this, about 80% of proxies reported that they thought they understood the expected complications. Subjects whose proxies reported knowing the expected complications of dementia received fewer burdensome interventions in the last 3 months of life, as did those who thought their loved one had less than 6 months to live. They note that reporting a prognostic conversation with a physician did not make any difference in rates of burdensome interventions that they could tell: it was the expectation of a short prognosis and the knowledge itself of complications (regardless of where that knowledge came from) which were associated with the different outcomes.

So, further corroborating data that knowledge of prognosis (in its broadest sense - not just time but what is expected to occur) changes care at the end of life. What excites me about this and similar findings (and there has been a fair amount of research indicating that prognostic knowledge is associated** with better care at life's end) is that it is something we can change. Or, it seems like something we can change, as at least these data indicate we continue to do a piss poor job of telling people what is likely to happen to them or their loved ones. Frankly, prognostic knowledge is one of the only things I know of which has routinely been shown to effect end of life care for the better (I expect to be shouted at in the comments for this statement) which makes me wonder that all the fancy palliative/end of life care quality measures that have recently been promulgated should be reduced to: tell patients what the future likely holds for them, offer options.

**Getting off my bandwagon for a moment, one should reflect on the 'associated' there. As with the Coping With Cancer Study (see 7th paragraph down), there is always the possibility here that this association can be accounted for not by causation (prognostic knowledge --> different decisions --> better end of life care) but by a confounder which makes patients/families much more open to talking about prognosis/reporting prognostic knowledge/conversations/impressions. That is: confounder --> more likely to engage a clinician about prognosis and/or report in a research environment prognostic knowledge + also more likely to choose 'gentler' end of life care --> better end of life care. What that confounder is I'm not sure exactly but I wonder if it's some generalized 'more comfortable with death and dying and talking about it.' The question I'd like to see answered is one that can get at causation. That's unlikely to happen in a controlled trial (at least with real-life terminally ill patients) of course.

All this aside, the more data we have showing that prognostic knowledge changes outcomes (improves them) the better, and the studies like this not only sharpen this knowledge for clinicians but for patients as well (see here).

See also this associated and very pro-palliative care editorial.
Our pals at GeriPal (funny) blogged about the same article as well and talk a little about the Medicare Hospice Benefit and these findings.
The same NEJM issue also had a fascinating study on dialysis in older patients and next week I plan on blogging on that and another paper on dialysis in advanced age. Mag Citrate will return; I know how much everyone loves it so.

Hospital at Home for Decompensated Heart Failure

2009-10-21T20:35:00.001-05:00

Imagine the year is 2022. You're a palliative care practitioner working with a hospital based team. An emergency department physician calls you to see an 83 year old man with stage D congestive heart failure who came to the hospital with a several day history of worsening dyspnea and orthopnea. He had two admissions earlier in the year. After the last one, he spent three weeks in a skilled nursing facility before returning home semi-independently. Upon evaluation of the patient, he tells you that his main goals are to be at home with his family and dog, Miffy, but he also hopes that he'll be able to sleep without awakening with dyspnea so frequently and wants to do everything "within reason" to live until his granddaughter graduates from college in four months. He has a POLST form that indicates he wishes to be DNR, and this has already been confirmed by EMS and the ED physician. Your interdisciplinary team evaluates the patient, and finds that he has excellent support from his wife and three daughters as well as a couple of neighbors. After extensive discussion, it is decided that the patient will be discharged home from the emergency department with follow-up later in the day from your colleague who is currently on service with an affiliated hospital-at-home program. Your colleague sees him daily for four days and then every other day for two weeks. He also receives daily nursing visits for the first 14 days. He returns to his baseline and afterwards, he receives intermittent home nursing.

Far-fetched? Perhaps. But a prospective, randomized controlled trial from Torino, Italy recently published in the Archives of Internal Medicine suggests that it may be possible to provide hospital-at-home care to geriatric patients with decompensated CHF without worsening six month mortality and possibly improving certain quality of life indicators (compared to routine hospital care).

The study included patients older than 75 with stage C congestive heart failure and New York Heart Association class III or IV symptoms who had an acute decompensation of CHF requiring hospitalization. Patients were excluded if they lacked family support, required mechanical ventilation, lived outside of the catchment area, or had severe comorbidities. Of 528 potential subjects, only 101 were randomized.

Outcomes:

15% of patients in each group died (p = .83). This was the primary outcome.

Statistically significant differences in favor of hospital at home (all outcomes at 6 months after admission): Geriatric Depression Scale, Mini-nutritional Assessment, and Nottingham Health Profile (looking at overall quality of life)

No statistically significant difference: Measures of functionality and mini mental state exam.

Patients at home received a mean of 20 days of hospital-like care versus a mean of 11 days for hospitalized patients.

Fewer patients in the hospital at home group were readmitted to the hospital within six months, but this was not statistically significant. The number of days between hospital discharge and readmission was greater in the hospital at home group.

No patients in the hospital at home group were institutionalized after discharge while 16% of hospitalized patients required some form of nursing facility after hospitalization.

Hospital at home cost less overall ($2604.46 for each patient treated at home vs. $3027.78 for those hospitalized).

Stress levels were higher for family members of hospital at home patients.

Limitations in interpretation and application in the United States include the fact the study was done in Italy and the team applying the intervention is well-established (in existence for 20 years and providing care for over 1000 patients over the last ten years). An associated editorial does note that there are examples of hospital-at-home programs in the United States (Johns Hopkins, Presbyterian Healthcare Services in Albuquerque, and the VA in Portland, OR) but it's unclear how these programs differ in structure and services provided. (The Hopkins website references a study from JAGS indicating that caregiver stress may be less in their hospital-at-home program than for caregivers of hospitalized patients in contrast with the current study.)

In my hypothetical scenario above, the practitioner is a palliative care specialist. Why? Well, mainly because that's the lens through which I see the world. Certainly the outcomes that were significant carry much valence in the world of palliative care, so why not make this a palliative care intervention if that's who is interested in providing the service or if a geriatrics service isn't available? I will go to bed dreaming* of health care reform that allows for a more sensible hospice benefit which is more fluid with other home-based services (such as interventions like this) and which doesn't force the "terrible choice." The current hospice model might have a lot to offer in terms of helping to reduce the stress of family caregivers of a hospital-at-home patient.

Of special note is the fact that patients in the hospital-at-home group received acute services longer than the hospitalized group, but the latter group was at higher risk for requiring post-discharge nursing facility care. This turns the concept of "throughput" on it's head. DRG's and SNF's were introduced as cost-saving mechanisms for Medicare. A byproduct over the years is the intense pressure for hospitals to move patients rapidly through the system (not for the sake of the patient, but for the sake of the system). Could the hospital-at-home model represent another opportunity for Medicare to offer patients greater choice while perhaps saving money? The business model likely isn't there yet, but perhaps this will be a "disruptive technology" of the future. I'll remain hopeful without holding my breath.

*Okay, I really don't like dreaming about work.

NYT on Prison Hospice Inmate Volunteers

2009-10-21T20:31:00.002-05:00

The New York Times continues its coverage of hospice and palliative care related issues with a compelling report (with associated audio slideshow) on a volunteer hospice service at Coxsackie Correctional Facility in upstate New York. The article discusses the aging of the prison population, but mainly focuses on the experiences of inmates who have volunteered to provide support for dying inmates at the facility. Some of the lessons the inmate volunteers learn are not unique and might be extrapolated to all who provide care for the dying:

Being in the presence of a dying person can be transformative. You likely will have moments that remind you how fragile life truly is and will learn to value it more than you did previously. Convicted murderer John Henson poignantly describes his personal version of this lesson.

“I was just thinking about why I’m in here and the person’s life that I took,” he said. “And sitting with this person for the first time and actually seeing death firsthand, being right there, my hand in his hand, watching him take his last breath, just caused me to say, ‘Wow, who the hell are you? Who were you to do this to somebody else?’”

Attention to suffering at the end of life is a human right that everyone deserves and empathy is a key component. Benny Lee is another inmate who describes his attitude toward the death of even friends as "callous" before his hospice volunteer experience. Now, through his experience he's been able to see the suffering that death can entail and seems to have a growing understanding of the salutary experience of empathy.

Premature reassurance of dying patients is non-beneficial (and usually, the reassurance is a response to the reassurer's emotions rather than the patient's). Wensley Roberts is yet another inmate volunteer who tells Allen Jacobs to "man up" as Jacobs faces death. Jacobs rebukes Roberts emotionally, asking Roberts if he wants to die in prison. When Roberts answers "no," Jacobs anger evolves into sadness as he states the nearly universal fear amongst prisoners of dying in prison.

In addition to talking to volunteers, staff at the prison were interviewed about the program. The deputy superintendent for health services talks about some resentment of the prison guards that "people in prison for horrendous crimes getting better medical care than their families," (referring to the volunteer program which includes around the clock companionship near the end of life). Really? Rather, I suspect that some of them don't agree with the claim about this stuff being a human right, and I'm dubious about any claim that the circumstances of care might be better for prisoners than non-prisoners just based on the presence of a volunteer program. However, I know from professional experience that some prison guards can exhibit tremendous compassion. (I work at a hospital that accepts the state's prisoners for hospitalization needs. The patients' guards in the hospital usually come from the patient's correctional facility and sometimes have valuable personal information about incapacitated prisoners, including what the prisoner's main concerns have been.)

The director of nursing, Kathleen Allan, also is indirectly quoted as saying:

...the inmate volunteers bond with the patients in a way that staff members cannot, taking on “the touchy-feely thing” that may be inappropriate between inmates and prison workers.

I could see the potential for "bonding" between inmates that may not be possible with prison staff, but am I being Pollyannish to expect that there might be room for some display of empathy (that "touchy feely thing") by prison staff, especially the medical staff? If the inmate is fighting you to get out of his handcuffs or verbally abusing you, that's one thing, but if he's laying in bed in tears because he can't see his long-lost daughter and he's expressing remorse for his crime, doesn't that call for a different response? Empathy does not cross the line in this case, but a person needs to know how to express it, and it will come to no surprise to any that I have no idea what role empathy is given in the day-to-day jobs of prison guards. Empathy can play a role in conflict deescalation, so would seem to be a vital skill for a guard to employ.

At one time, Coxsackie did have an outside hospice agency that provided care for inmates. Eventually, they switched to the inmate volunteer program, ditching the agency. One might mistakenly conclude from the article that the hospice agency merely provided the same services as the inmate volunteer program (only with non-prisoners), and the article implies that the change was only for the better AND it might have saved money. In not having an expert interdisciplinary team (hospice nurses, social workers, chaplains, their own volunteers, medical director oversight, etc) managing the patient something was lost, no matter how impressive the benefits of the inmate volunteer program have been.

Lastly, Allan does talk about some very real problems that are faced in caring for dying prisoners, including drug diversion (with some inmate volunteers involved) and victimization of the dying. You don't have to be a prisoner to be at risk for these issues, though.

To read more about prison hospices, see The National Prison Hospice Association website. Also, see a couple of past posts related to the prison population here and here.

Mag Citrate 2: JCO edition

2009-10-13T20:15:00.005-05:00

From my back-log of Journal of Clinical Oncology issues.

1)
First is an editorial about health related quality of life, cancer survival, and research (free full-text here). (It's a response to this paper about HRQOL predicting survial in early stage head and neck cancer; I think most readers will find the editorial more interesting.) The editorial starts out reluctantly lamenting that the cancer research world only became interested in HRQOL as a research outcome because there has been some off/on suggestion that it predicts survival, and not because HRQOL is an end/outcome of importance by itself. It gives a little of the history of these investigations, ponders what the clinical utility of measuring HRQOL could be with regards to prognostication, and argues that patients care about more than survival and so should should cancer researchers.

What it doesn't address, and which is something I struggle with, is whether HRQOL is a fancified version of performance status (and if you look at most of the HRQOL scales - EORTC QLQ, SF-30, etc., most of the domains are to do with functional status; not all, but most). Either way, HRQOL scales are rarefied abstractions, which clearly are measuring something, but what that is I don't really know and have not been convinced (yet) that it is something materially different than functional status.

2)
There's a fascinating study about prevailing end of life ethical dilemmas in Taiwan. Fascinating for many reasons, one of which is the opportunity to read the text of the Taiwanese 'Natural Death Act' which essentially gave legal clarification to doctors and patients that it was ok to stop unwanted/unhelpful medical treatments as patients die, and established some sort of protocol for doing it (you can read the act with the online article). I'm not sure how this is actually done in real life, but reading the act you get the sense that if patients want 'hospice-palliative care' they have to sign a form saying that (of course you do in the US too, to receive hospice benefits). It also has language which seems to say that doctors should only inform patients of their (presumably terminal) condition if the patient has 'clearly' expressed a wish for such knowledge (one can argue whether this is good or bad, but it's notable to see it in a law).

The prevailing ethical dilemmas that the researchers found (by surveying doctors and oncology nurses in Taiwan) were very familiar (artificial nutrition/hydration, patients wanting alternative treatments, etc.). The top one, by far, was truth-telling, which is certainly an issue here, but perhaps more acutely in Taiwan.

3)
There is also a 'big picture' discussion on 'palliative cancer care', originating from an ASCO taskforce, and looking back over the last 10 years since a prior ASCO statement on palliative cancer care. Most of it is laudatory about ASCO accomplishments in the last decade, with a couple zingers thrown in (this was my favorite):

Although there has been an overallincrease in the use of hospice services, ASCO has not activelypursued strategies that would increase acceptance and lead toearlier referral to afford patients and families optimal valuefrom the Medicare Hospice Benefit and other hospice-relatedhealth care coverage.

The rest of the paper outlines what ASCO aspires to do in the next ten years, with a heavy focus on integrating 'palliative cancer care' in cancer centers worldwide. All swell, but there is a distinct lack of mention of palliative care specialist services (a lot of talk of providing palliative cancer care across the continuum, some mention that specialists should be available 'when necessary,' but a noticeable absence of a hearty endorsement for the universal availability of specialist level palliative care for cancer patients). The taskforce is mostly palliative specialists who are/were practicing oncologists as well, and I don't know if I'm over-reading this absence, and if I'm not I assume it's due to ASCO discomfort with the idea and not the authors'.

This aside, most exciting to me was their recommendations for the next 10 years of goals in education, including recommending to ACGME that all onc fellows have one month training in palliative care. That would be welcomed.

4)
And on the supportive cancer side of things, the most recent issue is dedicated to thrombosis in cancer patients, with review articles on prevention, treatment, biology, etc. I just read the consensus paper (which is a narrative summary of consensus guidelines): basically yes you probably should give prophylaxis to hospitalized cancer patients, and low molecular weight heparin is the drug of choice for treatment of VTE. They outline a research agenda: no mention about the kinda hot topic of VTE prophylaxis and treatment in dying patients and hospice patients.

Tom Quinn

2009-10-13T19:20:00.005-05:00

Tom Quinn, our 3rd contributor to the blog, is leaving Pallimed. I want to acknowledge the wonderful work he has done for the blog over the years, and thank him personally for his contributions, wisdom, and equanimity. ...As well as recall fondly the day last March when we received our award at AAHPM that Russell Portenoy called him both a doctor and a 'young man.'

If you're a late-comer to Pallimed - you can peruse Tom's posts here or via the label cloud on the left.

Thanks Tom - look forward to talking with you in the comments and hope to work again with you again someday.

Onion on Death Panels

2009-10-13T19:06:00.006-05:00

It was inevitable that The Onion would tackle the 'death panel' debacle, which they did this last week with:

Obama: Health Care Plan Would Give Seniors Right To Choose How They Are Killed

It's as obnoxious as you'd expect from The Onion...

Obama also accused his opponents of using scare tactics to score political points, manipulating seniors' fears with misinformation about their upcoming state-mandated deaths.

Etc. Etc. I usually really like Onion's pieces to do with death/dying/etc. (and still maintain this video [blog post here; direct link to video here] is one of the most profound satires on America's relationship with health & death I've ever seen).

This one, if you read it, is really brutal, and perhaps hits too close to home (not in its accuracy, but insofar as there are people out there - and these people include our patients/their families - who believe something close to this could happen). I'm curious as to others' reactions to this.

Educational Exchange & Other Sundries at AAHPM

2009-10-13T18:48:00.005-05:00

1)
There is a late entry (at least as far as application deadlines go) for next year's AAHPM annual assembly: an "Interactive Educational Exchange: Sharing Innovative Teaching Materials and Methods." The organizers of this session are looking for submissions of innovative educational projects/materials/etc. Unfortunately, there is no website where you can get the submission forms, etc. so you'll have to email one of the organizers of the Exchange (see below). Below is from the organizers (note that you'll have to contact them for the actual submission forms). If you have any problems, let me know. Should be a great session, and if successful hopefully a version of this can continue for future meetings.

We want to call your attention to a new interdisciplinary educational scholarship opportunity at the 2010 Annual Assembly in Boston. We are soliciting submissions for the "Interactive Educational Exchange: Sharing Innovative Teaching Materials and Methods," an hour-long session at the Annual Assembly in which selected educators or trainees will share novel curricula, teaching methods or evaluation tools with the larger palliative care community. We encourage you to review the attached documents-- The Call for Submissions, The Submission Form, and the Submission Example-- and consider submitting your own materials or forwarding this email to colleagues who might be interested. Selected abstracts will be presented in a brief, oral presentation and structured interactive format. Trainees are encouraged to submit with mentors. Those who have already submitted an educational abstract for the Call for Scientific Abstracts may also submit to this venue, if additional criteria are met. The deadline for submissions is October 30, 2009. We thank you for supporting our goal of promoting the sharing of and dissemination of palliative care educational materials and hope to see you or some of your colleagues at the session. Please be in touch with us if you have any questions.

You can contact Laura Morrison, M.D. at lmorriso [at] bcm [dot] tmc [dot] edu for the submission materials.

2)
Next year's assembly will also have a dedicated forum (which takes place over the whole day on Saturday) specifically directed at medical students (for dirt cheap as well - $25 - which includes a membership in AAHPM). If you know any students showing interest in HPM as a career path I would let them know about this and encourage attendance. There is a link to a Word doc outlining the day here. Given that we might be facing significant workforce problems in the future, especially as grandfathering (for board eligibility) is going away in a few years, interesting medical students in our profession now is critically important.

3)
While we're on the subject of late deadlines for AAHPM/Boston - the case conference (given by fellows and other trainees) submission deadline has not closed yet - it's November 3rd.

PBS NOW Gundersen Lutheran Hospital & Advanced Care Planning

2009-10-11T22:59:00.000-05:00

With a tagline like: "What exactly is a death panel?" PBS is starting to sound like an afternoon tabloid show, but they end up covering the topic very well in the 25 minute clip now available online. I am sure many palliative care people are familiar with the Gundersen Lutheran "Respecting Choices" project to increase the communication and recognition of advanced care planning through living wills, health care power of attorney's, POLST's and consultation with medical staff. If you are not familiar with it here is a brief background:

The program started in the early 90's with an oncologist, nurse practioner, and a clinical ethicist, who is also featured in the video clip (Bud Hammes, Ph.D.). And within two years they had a 85% penetration of advanced directives and a shocking 95% were found in the chart. I say shocking because if you have ever spent more than a week on a palliative care team you realize you may be the first one to ask more than one question about advanced directives and your team is the one who actually gets the information in the chart. There are similar projects based off of "Respecting Choices" sprouting up around the US and also internationally.

The clip also featured a palliative care doctor making home visits! Awesome!

The only slight but important error in the clip mentioned by the reporter and Hammes was that Medicare does not reimburse for having these conversations. That is actually not true. Medicare does reimburse for these conversations indirectly via physicians billing for time spent with patient and family. A longer conversation means a physician could bill using a prolonged service code. Billing by complexity will always bring in more revenues compared to billing by time so it basically undermines good communication by nudging a medical system towards seeing more patients in shorter amounts of time and then billing for the higher complexity. So the bill tried to set up a unique reimbursement structure which the details of relative compensation compared to complexity or time based billing were still unclear. Regardless that section of the bill is not in the Senate version and is still (I think) in the House version and is now political poison given the hyperbole.

Palliative Care Grand Rounds 1.9 - GeriPal

2009-10-11T22:17:00.000-05:00

Geripal has done a excellent job with October's edition of Palliative Care Grand Rounds, the monthly best of the Palliative Care blogs (not to be confused with what I posted last week which was the weekly best of all medicine blogs).

Eric Widera and Alex Smith give you a cleanly organized overview that you should spend a little time with this week. If you have any interesting posts send them on to Amber Wollesen and Amy Clarkson who will be hosting at Pallimed: Arts and Humanities the first Wednesday in November.

If you want the latest schedule or want to look through archives of past Palliative Care Grand Rounds go to palliativecaregr.blogspot.com. If you are interested in hosting you can always email me ctsinclair@gmail.com

Top Comments & Posts for September 2009

2009-10-11T21:00:00.004-05:00

Top Blog Posts (most viewed) from September 2009:

Top Commented Articles from August 2009:

Featured Commentary from Pallimed Readers:

Anonynmous on Huckabee, Kennedy and the Politics of Distortion:
While Drew, Ron, and most of us, in the field are preaching to the choir, the PR train has left the station. The bigger problem, however, is that the train does not have an engineer on board - since G Beck's GOP is (wisely) cheering from a safe distance. We and only we are to blame for the public lack of understating what Palliative Medicine is: we were suppoosed to be the engineer. Having marketed the specialty with avoidant strategies (we are not, aah so not about dying) the mis-marketing has caught up with us.

Mike Bevins MD, PhD said on Death Panel Concerns in the UK with the Liverpool Care Pathway:
I wish they had written more in the letter, but I think they do have a point. They allude to "algorithmic banking," and we are living in an age of algorithmic medicine, where consensus guidelines and algorithms often become the standard of care, with the implication that one need only follow the algorithm to give good care. This is an example of what sociologists call the degradation of work (a too-prejorative term in my opinion), wherein complex tasks are subdivided, standardized and reduced so they can be performed by less-skilled (and lower paid) workers. This is easiest to see in manufacturing, where the previously complex job of crafting an object is divided into relatively simple tasks.

Phil Rodgers said on PC Trial in JAMA:
There is a risk, however, that a high-profile portrayal of 'palliative care' as a narrow, almost ancillary intervention with such a modest impact (mood and QOL effects notwithstanding) will lead some to doubt the effectiveness of our practice, particularly if they have pre-existing skepticism about HPM. Disease management programs are not only fading from CMS favor, but they are on the chopping block at many institutions.

Alex Smith said on Refining Treatment Preferences for Patients Who Want "Everything":
The article is thoughtfully done, and raises a different set of questions for me. 1) How can we translate these nuanced communication strategies into actionable language? These article reveals the limits of our language - "do everything", "full code", and "DNR." Yet the need to be nuanced needs to be balanced against the need for ease of communication during patient handoffs and when the patient is crashing.2) I completely agree with the authors approach to communication in an idealized form. However, imagine the intern, on admitting night, at 1am, with an unfamiliar patient, trying to establish "code status." That patient is going to be full code. These conversations take time, and I think we need to move away from having these rushed and nearly meaningless conversations on the day of admission, toward having more meaningful substantive conversations over the course of the hospitalization.

Jerry said on ICU Delirium and Prognosis: (I had to put this one in as a best comment!)
I gotta make more regular visits to your site, Drew. You folks do really good work.
I'm glad to have found this here. My ICU colleagues and I get so focused on the immediate challenges that we lose sight of the larger picture.
-----------------------------------
Lastly, lots of good back and forth on the Onsolis and REMS post so I won't post any here. It is best to read the whole exchange.

Thanks for all the comments and keep them coming!

Grand Rounds Vol 6, No 3: The Art of Medicine and Nursing

2009-10-06T00:20:00.284-05:00

Welcome to Grand Rounds, a weekly round-up of the best of the medical blogosphere. We here at Pallimed (Drew, Lyle, Amy, Amber and myself) are honored to be hosting Grand Rounds for the 3rd time. For the history books here are the 2007 (theme: prognostication) and 2008 editions. The theme this week is "The Art of Medicine and Nursing" in honor of our sister blog Pallimed: Arts and Humanities.

Art Theory
Last week's grand rounds was especially insightful courtesy of everyone's favorite Dutch medical librarian/blogger Laika (aka Jacqueline). This week she has outdone herself with a wonderful post entitled Of Art & Medicine. A must-read post especially for the fact you will always know the difference between Geneeskunst and Geneeskunde. She deftly transforms "Art of Medicine" into "Art in Medicine" and "Medicine in Art"

Poetry
Dr. Rob channels his inner Theodore Geisel to give us a Seussian poem on Health Care Reform. A sample:

A plan that is public creates great distress,
Just growing the government won’t fix this mess!
Absolute power just leads to excess!
(But what’s their alternative’s anyone’s guess)

Dr. Maurice Bernstein of the comment magnet site Bioethics Discussion Blog shares a poem he wrote about doctors reflecting on the care they have given.

There was a phone Call from Doctor Smith
Did I interrupt Mary
To take the call
As though more
Important?

Hospice chaplain Ken Bradstock of Rainy Nights shares a short poem about a pediatric patient.

Humanities
Dr. Charles sent me one post but as I explored the rest of his blog I found a far more suitable candidate for grand rounds and substituted his post on the Dialogues with Darwin exhibit.

"I came away from the exhibit with a great respect for Darwin as a synthesizer of ideas. Among the disparate influences in his life that led to his unifying theory, one can count his grandfather’s poetry, his early training in geology and his correspondence with geologist Charles Lyell, his legendary voyages aboard the H.M.S. Beagle collecting and comparing biological specimens, his reading of Thomas Malthus and economic theory, and even his study of theology."

Cuisine
Cooking challenges the taste buds and if these three geriatric/palliative UCSF doctors from the blog GeriPal are willing to taste test Bowel Meds on video, then I would invite them to my test kitchen any day. By the way, GeriPal is one of the best new medical blogs out there, lots of comments and discussion with excellent topics. (Geripal is also hosting Palliative Care Grand Rounds tomorrow!)

Photography

Reading the rest of Dr. Charles blog allowed me to find this wonderful site from radiologist Steven N. Myers. He features x-ray images of flowers and of course since this is Pallimed I wanted to feature this particular plant which has lead to great advances in pain control (and some problems too of course).

Literature
17th Century author Sir Thomas Brown shared this reason why dealing with end of life issues is so difficult(via the excellent and highly recommended Medical Futility blog):

"The long habit of life indisposeth us to death."

Television
Grey's Anatomy utilized the DABDA theory as part of a recent show. Don't know DABDA? Angela Morrow at About.com's Palliative Care blog does. (Hint: Kubler-Ross)

Ink Art
Although lengthy the NYU Literature, Arts and Medicine Blog continues to reward patient readers with a post about Dr. Fleischmann and the Art and Medicine in Terezin. This post is part of a larger exhibit:

"depicting the practice of medicine in one of the most notorious "ghettoes" of World War II. Terezin (or Theriesenstadt) served as a "model camp," infamously shown to visitors who were impressed by the seemingly decent living conditions. But the inmates knew all too well its sinister alter-ego as a transfer point: a limbo between their former lives and their ultimate fate."

NYU also has the best online database ever for literature, arts and medicine.

Would you get the Wilderness Medicine Logo as a tattoo? Paul Auerbach of Medicine for the Outdoors is considering it even after reporting on Mycobaterium in the ink for tattoos.

Paintings
Dr. Charles again with a post on colorblindness and gene therapy.

Fabrics
Dr. Ramona Bates from Suture for a Living made a quilt for the psychiatrist bloogger Intueri and sold it on Etsy to donate funds for the Multiple Sclerosis society on behalf on Intueri. Medical bloggers are such cool people!

Graphic Design
Dr. Shock (Walter van der Broek, a Dutch psychiatrist) gives us a great breakdown of the ins and outs of PubMed's redesign. Graphic design is so important in making something functional while still appealing to the eye. Sadly it is under utilized in EMR's! Dr. Shock has some of the most wide ranging and interesting insights on medical issues IMHO.

Music
Dr. Wes describes 'The Final Opus' in an ode to the well-orchestrated maneuvers of a medical team.

"It was midnight and the Emergency Room door opened like a curtain on a Broadway. A lone man sat in blue at the countertop, writing. Behind him, the chorus, working feverishly on the protagonist - the script rehearsed a thousand times before.
Clothes off, Story?, facemask, C-collar, endotracheal tube, breath sounds, telemetry, IV’s, blood work, pulse ox, Stop."

Dance
Martial arts could be considered a form of dance if you consider all body movement a form of dance. Frances Shani Parker of the Hospice and Nursing Home Blog highlights some seniors learning Cane-Fu.

Public Speaking and Debate
Yes this is a lost art in medicine given the ubiquity of Bad PowerPoint. So please all medical educators take some hints from Six Minutes: A Public Speaking and Presentation Skills blog with weekly Friday wrap-ups of the best speaking tips.

Things not to say in the ED if you want to be take seriously via Life in the Fast Lane blogger Peter Allely. Some good ones:

‘I have a really high pain threshold.’
‘I fell over in the shower.’
‘I was painting in the nude.’

Best Off Topic Blog Posts (i.e I couldn't force an artistic theme on them)

DB and his Medical Rants picks off one of my favorite topics: Degradation of Medical Notes

Bongi of other things amanzi demonstrates creativity in getting Dermabond off eyelashes.

Dr. Wes with an excellent transmogrification of the legal profession and ICD-10 gives us ICLD-10 in his post "If Lawyers billed like doctors."

Marya Zilberberg at Healthcare etc. argues about what to do when the best evidence is not available to base your medical practice.

"But, let's not be fooled: most of the time what we end up practicing is absence-of-evidence based medicine. Question your doctors closely to distinguish between the two, as this distinction is the key to rational decision making."

Dr. Joel Topf of Precious Body Fluids (excellent blog name!) discusses one of the troubling consequences of hearing esteemed professors lecture on the Pharma sponsored circuit.

"It is illustrative of what is wrong with academic nephrology. Dr. Arruda hates the first slide in his deck. Why doesn't he remove/fix/change the slide? Because the slide deck has been vetted by the FDA and Otsuka's lawyers. He can't change it. He has signed a contract saying he won't change it."

CODA
Thanks for reading and thanks to all who submitted. You will find all other posts that were submitted but didn't quite make the theme in the first comment on this post. Join us next Tuesday at Survive The Journey.

Mag Citrate 1: Hospice, Hastened Death, Prolonged Grief, & More

2009-09-30T08:00:00.005-05:00

As I mentioned in a recent post I have accumulated a large back-log of articles to discuss, and so am going to do a few weeks worth of quick-n-dirty article commentaries to catch up.

And so here it is, the 2nd Annual Palllimed Autumn Mag Citrate Bonanza (in reverse chronological order going down my pile):

1)
Medical Decision Making has a study exploring patients wanting chemotherapy and hospice at the same time. It is reminiscent of research we discussed here. This study is based on a survey of smokers (not actual lung cancer patients, and who had a median age of 34 years) and asks them a series of hypothetical questions (essentially if you had incurable lung cancer, and these were the options presented to you, which would you prefer). They were given accurate, albeit simplistic, descriptions of ‘supportive care,’ chemotherapy, hospice care, and hypothetical combinations of those. Basically most subjects responded that they’d prefer chemotherapy and hospice at the same time. This should not be surprising since essentially what they were choosing in this research was 'The Most Care/Win Win' option (treatments to prolong their life, to attenuate chemo side effects and cancer symptoms, and added practical/emotional/spiritual support to boot). Sounds pretty good when the alternatives were not having one of those benefits, and I’m not sure extrapolating from this young/healthy population’s choice of More Help over Less Help particularly adds anything to our understanding of barriers to hospice care.

Which is not to say they’re wrong: having to forswear chemotherapy is a barrier, but a complicated one, and doesn’t answer the question as to whether we want hospice per se to be able to do everything for those with short prognoses (see related post link above). That is, I think part of this research seems to be rooted in the idea that as a society/medical system if someone has a short prognosis (less than 6 months) they should be in hospice and it's a major problem that so many aren't. I'm personally not sure that this is the case (hospice is underutilized, majorly, to be sure) - they should be offered hospice, they should be receiving superb palliative care (whether or not from a palliative specialist), and they should not be offered ineffective, burdensome treatments: 'The Problem' is that patients aren't getting this anywhere nearly as often/much as they should be. This is different from them 'needing' hospice, and that the 'fix' is just getting these patients into hospice. If we advocate for a system in which patients can receive ineffective, burdensome treatments plus hospice care to soften the blow - we aren't doing anyone a big favor.

(Thanks to Dr. David Weissman for alerting me to this article.)

2)
NEJM has a tidy review of renal failure in cirrhosis. It discusses, generally, its pathophysiology and treatment, and the role of liver and kidney transplantation in its management. While not - at all - palliative oriented, it does touch on prognosis, as well as provides a concise summary of the approach to this highly mortal situation that is not uncommonly seen by palliative clinicians at hospitals which manage these patients (ie – a nice brush-up article for the teaching file). The prognosis data are dismal: this article argues for a 50% 1 month and 20% 6 month survival for patients with cirrhosis and renal failure (without transplant). Yikes.

3)
On the social media & medicine side of things, JAMA just published a survey of medical school deans asking about concerns/history with inappropriate content posting to social media sites by medical students. It seems it is indeed an emerging problem. While a lot of the problem seems to be students whining and revealing themselves in undignified situations (drunk/suggestive party shots, etc.), there were also problems with posting confidential patient material (an issue more of a concern to medical bloggers and why we have tried to be very strict about this on our blog). Most of the reports to deans about this were from within the medical school (staff, other med students, etc.) and only 4% were from patients/families themselves.

4)
Social Sciences & Medicine has a qualitative study using grounded theory about the desire for hastened death (DHD) – based on extensive 1 on 1 interviews with 27 adults with advanced cancer at a cancer center in Toronto, all of whom endorsed some contemplation of a wish for a hastened death. These were sick patients – 70% died during the course of the study. The themes that emerged are consistent with what I think many of us who work with dying patients hear frequently. They found that DHD clustered around 3 themes: a hypothetical exit strategy if things get rough; an expression of despair, and a more peaceful-or-at-least-resigned, ‘letting go’ meaning. None of these themes and the quotes they give really are consistent with suicidality – these patients who expressed, at times, DHD, were not suicidal, at least in the way we usually think about suicide (that is – really/truly wanting to be dead; instead the patients wanted to feel better or, as they resigned themselves to the inevitable, had times when they wondered to themselves that given this was actually going to happen anyway why wait around).

It’s a fascinating read, if nothing for the quotes from patients and to hear what they go through (and the things that others put them through):

“I've experienced such incredible pain over the last little while and more in the last week. Such incredible pain that it made me think that death is preferable to this…I'll sit there for 2 hours in terrible pain. Such pain where I can't yawn even, and I get only half a yawn and my whole insides turn and waiting for the medication to start to work…I'd love to have 48 hours let's say, I'd love to have this weekend where I could plan to have a nice weekend and have no pain. I'd love to do that and it doesn't happen, and the pain affects everything. It makes you tired. It affects how you can eat. It affects your mood. It affects other people, and the fact is that even if you try to hide it, you can't… So that's hard…and I know it's gonna get worse, so that's hard too. It's great to be alive, and pain takes that life out of you, and to sit there for 2 hours with a blanket around you just shivering, with no solution, is really hard.”

“I find it difficult. The two extremes, where the people who tell me that I'm not going to die because God is good, and that God will save me in a miracle, and I say ‘God is good and sometimes He will save people in miracles. But if it was something that would happen to me – it would have happened already. So we have to accept the fact that there is no miracle here…that my time is over.’ And I also find it very hard, the other side, where I ‘love’ the people who constantly say there's nothing wrong with me, everything will be fine, because there is something wrong with me and everything will not be fine."

5)
PLoS Medicine has a study about ‘prolonged grief disorder’ (aka ‘complicated grief’) which tries to validate proposed diagnostic criteria for PGD for the DSM V. The data come from the Yale Bereavement Study (which also generated this controversial and misunderstood JAMA paper about the stages of grief) and involved interviewing bereaved adults (~300, mean age 61 years, interviewed on average 6, 11, and 20-months post-loss).

This is a complicated, statistics-heavy paper (involving how they developed and validated the diagnostic criteria for PGD based on their data set) and I’ll freely admit it broke my brain reading it; this is to say that I can’t comment personally about how persuasive, or not, their proposed criteria are (an accompanying editorial is supportive however of the findings). It's a revealing insight for the uninitiated into how these new diagnoses get established.

The proposed criteria call for diagnosing PGD after 6 months post-loss, and the symptom criteria (you can read in the paper – Table 3) include yearning and the following other symptoms (and in usual DSM style, noting that these cause significant impairments, are not better explained by another disorder, etc. etc.).

Confusion about one’s role in life or diminished sense of self (i.e., feeling that a part of oneself has died).
Difficulty accepting the loss.
Avoidance of reminders of the reality of the loss.
Inability to trust others since the loss.
Bitterness or anger related to the loss.
Difficulty moving on with life (e.g., making new friends, pursuing interests).
Numbness (absence of emotion) since the loss.
Feeling that life is unfulfilling, empty, or meaningless since the loss.
Feeling stunned, dazed or shocked by the loss.

'Death Panel' Antidote

2009-09-30T07:55:00.000-05:00

‘Forget the politicians, the real debate about the end of life happens every day in hospitals and homes around the country.’

This is the tagline from an online feature about end of life care, palliative care, and the health care debate that a reader (utzgrrl) recently mentioned in a comment. I thought it was worth its own post. I’d never run across FLYP before but it appears to be an online, multi-media heavy (text, images, videos – make sure you look at this on a computer with speakers, that can handle streaming videos) general magazine. This article is overall balanced, sane, and positive about palliative care, and among other things tries to actually describe how these decisions actually happen. You can click around and listen to interviews with patients/families, docs (including some palliative care ones), ethicists, etc.

A refreshing representation of what we actually do, overall, and how these decisions actually get made - what patients and families go through, etc. Thanks utzgrrl.

Onsolis and FDA Opioid REMS: Is this the future of opioid prescribing?

2009-09-27T23:53:00.000-05:00

Image via Wikipedia

Thank goodness I get The Pain Medicine News. I used to think of it as a throwaway industry newspaper but lately it has been a great source of information about the FDA's plans toward the future of opioid prescribing and the Risk Evaluation and Mitigation Strategy (REMS) plans that are coming down the pipeline. This week's issue discusses the Pain Medicine communities trepidation towards the REMS for Onsolis. (article behind membership wall)

Some background first: If you have not heard about Onsolis yet, it is a film containing fentanyl applied to the buccal (inside cheek) surface to dissolve for immediate pain relief. If you are thinking "Haven't I heard of something like that before?" you may be recalling it with:

Fentora - Fentanyl buccal tablet made by Cephalon
Actiq - Oral transmucosal fentanyl citrate (on a stick but don't call it a lollipop!) made by Cephalon

Onsolis is made by BDSI and in the Summer of 2009 received FDA approval. And it got a parting gift from the FDA, the first opioid to be subject to REMS. I won't spend this post talking about the relative merits or risks of prescribing Onsolis but instead will focus on the REMS as it has a huge potential to affect good pain relief.

So here is the REMS process for Onsolis called FOCUS:

Each patient, prescriber, distributor, and pharmacy enrolls in FOCUS
Prescriber faxes the initial prescription information to FOCUS
Prescriber sends the original, hardcopy prescription to a FOCUS pharmacy via courier using the supplied shipping label
Patient receives a counseling call
While the hardcopy prescription is in transit the FOCUS pharmacy confirms that the patient and prescriber are active in the FOCUS Program database, the patient counseling call has been successfully completed and schedules Onsolis delivery to the patient.
Upon receipt of the original, hardcopy prescription, the FOCUS pharmacy dispenses Onsolis and delivers the medication directly to the patient via a secure, traceable courier (with adult signature required) (Apparently within 24 hours, and at most 5 business days)

So we can now add bureaucracy to the possible barriers to prescribing opioids. I am not sure how these steps reduce any risk with opioids with overdose and diversion being the two big ones I would assume the FDA is trying to reduce. I think the goal is laudable and one I think the hospice and palliative care community has not given the full attention I think it deserves, but the method to me just seems to add red tape without effect. Has the FDA tested this in opioids in a RCT to see if it reduces any risks? It would be nice to see an evidence based approach to this important problem. Thank goodness the law that gave the FDA this power also stipulates review of the REMS program for each drug at 18 months, 3 years and 7 years.

But if the FDA trials it with one drug, I doubt anyone is going to prescribe it when there are viable non-REMS options for immediate relief pain control. The Pain Medicine News article quotes BDSI staff diminishing the REMS effect on sales, but I think the REMS provide a really tough barrier to prescribing unless you have really run out of other options. The American Pain Society president wrote the FDA a letter stating they were "surprised and disappointed" the Onsolis REMS were "in stark contrast to many of the stakeholder suggestions made." The article also highlighted the special needs of the hospice and palliative medicine community although I do not know if anyone in our community was directly involved in any of these discussions.

The FDA has a pretty detailed FAQ on the Onsolis FOCUS REMS program here. The FDA does not expect the Onsolis REMS will be the REMS for long acting opioids. Here is a list of opioids they expect to fall under REMS in the future. The InVivo Blog has some more info on the FDA's strategy towards REMS. And here is BDSI's slide deck about Onsolis which I may tease apart more in the future.

And the cost of the medication is unknown at this time. I knew you were thinking that. Are you planning on enrolling in the FOCUS program? I will ask to enroll if only to tell you all about it.

Pallimed Hosting Grand Rounds Next Week

2009-09-27T23:15:00.004-05:00

Pallimed will be the host for Grand Rounds the weekly round up of the entire medical blogosphere. Just as a clarification this Grand Rounds is not the same as Palliative Care Grand Rounds, which is published monthly and focuses on a slightly more specific area. (And is really a swell blog carnival if you have not read it!)

The topic for Pallimed's edition of Grand Rounds will be the 'Art of Medicine/Nursing' which may be interpreted as you like, kind of like art.

So if you read any great blog posts please email me at ctsinclair@gmail.com with "Grand Rounds" in the subject header and if you would be so kind to add the following:

URL:
Author:
Why this highlights the "Art of Medicine/Nursing":

Special consideration will be given to those who submit blog posts that are not their own blog post. And fair warning I won't be posting every single link that is sent to avoid an endless post of links.

Looking forward to seeing your submissions!

AAHPM Pres Austin Cooney in the Media

2009-09-27T23:11:00.000-05:00

I am looking forward to seeing AAHPM President Gail Austin Cooney in Chicago this week to give her a pat on the back for all of her recent publications in high profile media publications. I think this demonstrates an important function of the AAHPM leadership to engage the public in conversations about palliative medicine and hospice.

This weekend she blogged at The Huffington Post about how the health care reform debate twisted counseling patients about advanced care planning into something more sinister. She also wrote a Letter to the Editor in the New York Times in August regarding the Palliative Care series. She was recently interviewed on an internet radio show. And she is one of the more active hospice and palliative care docs on Twitter (@gcooneymd). I just wanted to highlight what a great job she is doing.

If you see any other opportunities for Gail or the AAHPM to make an impact email Gail or let me know and I will pass it on at the upcoming board meeting.

Hospice & Palliative Care Formulary USA 2nd edition

2009-09-21T23:47:00.001-05:00

We don't typically endorse products, webinars, conferences, job listings or much of anything else here at Pallimed, but when we do know about a resource that can impact your everyday palliative care work we want you to know about it.

Such is the case with the Hospice and Palliative Care Formulary USA ($75/$65 for AAHPM members) now being published in the 2nd edition from the founders of PalliativeDrugs.com, Robert Twycross and Andrew Wilcox. I wanted to write in more detail about why I access this book more often than any other palliative care book since I just ordered 6 of them for the teams I work with.

The first edition was printed in 2006 and my copy is dog-eared from carrying it around, showing it to hospice team members, lending out to fellows, residents, nurse case managers, copying a page for a pharmacist, referencing it for numerous presentations, etc.

Any other medication reference book (nursing or medical) has so many warnings/misinformation about the medications we commonly prescribe and administer in palliative care settings that general pharmaceutical reference books are essentially useless. I often find nurses and physician trainees who read some of those freebie/cheap Nursing/Medical Drug Guides to start contradicting basic palliative care understanding.

For some poor examples from referencing other drug guides...

"We can't give more than 5mg of morphine...the book says she might have respiratory depression."
"Octreotide? I don't see anything about small bowel obstruction but it does treat a VIPoma."
"Constipation? How about we try more fiber?"

Here is why I find HPCF-USA so useful:

Detailed palliative care oriented medication information
Extremely well referenced drug monographs - Awesome for talks
FDA Approved indications clearly listed as well as likely palliative care uses
Cost information (in actual dollars not some crappy $-$$$$ scale)
Candid discussion about alternate route dosing/administration for many medications
Detailed pharmacologic information in tables to compare different meds within a class
A treatment monograph on 'Oxygen' - When was the last time you read 4 detailed pages about the ins and outs of oxygen therapy? Wonderful!
Monographs on related but not primary palliative care meds - A whole section on antifibrinolytic drugs! Bronchodilators! Diabetes meds! Potassium! Magnesium! You get the point.
Super helpful chapters covering meds in a meta-approach - Opioids and Fitness to Drive; Continuous Subcutaneous Infusions; Drugs Administered via Enteral Tubes
Designed for use in the USA (as opposed to the UK version with UK only meds like diamorphine)

Here are the things I wish were included/changed/fixed:

Better binding - it seems to be fragile after a lot of use, and my book gets used
Not much info on fentanyl IV compared to transdermal and buccal routes
The 2nd edition cover is a little boring compared to the Red, White and Poppy motif on the 1st edition.

If you are an AAHPM member you can get a 20% discount via the AAHPM website. Also you could access it online via PalliativeDrugs.com but I find the book very useful and a rapid access to have at my desk. And now with the extra copies I purchased it will be almost all of my clinical sites.

Do you use HPCF-USA? Tell me what you like best about it.

Disclaimer: No kickbacks given to any Pallimed author because of this post. We did give away a HPCF-USA free edition back in 2007 for our winter contest. And it was pretty cool when I met Robert Twycross in Austin and he recognized my name from Pallimed and told me he was a big fan of Pallimed. But that is not why I wrote this. Obviously I think this is a super awesome book.

AAHPM Board Meeting & Elections

2009-09-21T23:10:00.000-05:00

I am traveling to Chicago next week to attend the AAHPM Fall Board Meeting and I wanted to take this opportunity to hear from the Pallimed community if there are any issues you would like voiced at the meeting. Just trying to do my part in transparency and access so the community represented by the Board of Directors is heard.

I always knew I could email anyone on the board but it felt intimidating if I did not know them well. So here is your open invitation, we may not know each other well, but if you read Pallimed you probably know me well enough. I probably would not have been elected to the board without support from Pallimed readers so if there are any issues/concerns/praise/comments you would like discussed at a higher administrative level I will be willing to listen and pass it on.

You can always email me if you would like it to be private/confidential at ctsinclair@gmail.com or you may want to consider posting it as a comment on this post so the community can also chime in and give supporting or opposing views.

AAHPM Election
Also, just a reminder to all members of the AAHPM that it is election season and you should have received your ballots if you are a full-dues paying member. They must be post-marked October 2nd. Here is the pdf of the profiles of the candidates. (Behind membership wall)

First Person Accounts of Pain and Suffering

2009-09-21T22:56:00.000-05:00

We don't do a lot of first person narrative commenting here at Pallimed so I wanted to direct you to two fantastic pieces from the previous week.

GeriPal contributor Anne Johnson is a social worker who works with geriatric and palliative care teams (and in fact identifies herself as a GeriPal SW - a first?) who unfortunately had a very difficult time navigating the system to get a palliative care consult for her 93 year old father-in-law.

A couple of quotes to get you interested so you can finish the whole story at GeriPal:

"In other words, I wanted a "goals of care discussion." And that's why I was leaning over the gurney in the ER and shouting (because he's deaf), Joe, do you want to focus on being comfortable? No, he said, I want to wear pants. I took that as a metaphor. I was going to make this hospitalization different."

"I gave him a couple bites of a forbidden scone and jumped guiltily when the nurse came in, feeling like I'd snuck in a crack pipe."

Don't forget to read the comments on the piece as well and leave one yourself for Anne.

Image via CrunchBase

Also, Dana Jennings has an excellent piece in the New York Times health section today focusing on the pain that one cannot describe.

"If you can tell an E.M.T., a nurse or a doctor where it hurts and how much, that is generally a good sign. But what interests me even more is the pain that can’t be articulated. Fortunately, I’ve experienced this only twice."

The author goes on to discuss the meaning of severe humbling pain that prevents you from communicating and concludes there is no meaning. "It just is." Another good read from the New York Palliative Medicine Times Textbook. (If anyone wants to compile some of the articles based on some of the links here at Pallimed and some further searching, please let us know. It would be great to categorize some of these articles in a more organized fashion.)

Palliative Sedation in Annals

2009-09-18T17:05:00.000-05:00

Annals has a review of 'last resort' palliative sedation techniques (this makes two Tim Quill papers in a month in Annals). It begins with an apparently true story of a home hospice patient who was denied 'total sedation' despite refractory symptoms and requesting it (patient had to fire the hospice, and a previous palliative care consultant physician managed deep sedation for him over the phone: crazy).

The paper attempts 3 things: first, it tries to clarify the language used to describe sedating practices at life's end; second, it discusses ethical controversies about sedation; and third, it makes some practical suggestions that palliative sedation should be practiced by organizations only with explicit policies, procedures, and quality control.

The language proposed in the paper are three phrases:

Ordinary sedation: attempts to relieve a symptom (e.g. anxiety) without trying to alter a patient's level of consciousness. (I don't know why this then would be called 'sedation' as opposed to, e.g., anxiolysis with a medication which can have a sedating side effect, but that's not really important here.)
Proportionate Palliative Sedation (from the article): sedating medications(usually benzodiazepines) are progressively increased alongsideother symptom-relieving measures, resulting in increasing levelsof sedation during both waking and sleeping hours to help relievesuffering. It is usually initiated in response to otherwiseintractable physical suffering in imminently dying patients,as in the case described, for example, or for agitated terminaldelirium. The end point is relief of suffering that is acceptableto the patient by using the minimum amount of sedation neededto achieve this goal.
Palliative Sedation to Unconsciousness: This is what has variously been known as 'terminal sedation,' 'continuous deep sedation,' etc. Deliberately, pharmacologically, inducing a state of unconsciousness in order to relieve otherwise refractory symptoms, and with a plan of maintaining such a state until the patient dies (usually while withholding life-sustaining treatments otherwise such as artificial hydration/nutrition). They mention that this has been proposed, controversially, for existential suffering.

Fair enough; one might note that PPS and PSU in certain instances may, on the ground, appear identical (ie you rapidly sedate someone to unconsciousness for refractory symptoms), although a clinician's intentions might be different (PPS you are trying to control a symptom and 'happen' to need to use deeply sedating doses of a drug to do so; in PSU you've decided there's no way you can control symptoms otherwise, so you intentionally and from the start attempt to induce a pharmacologic coma).

One can appreciate that, in real life, what starts as PPS 'turns into' PSU in those rare occurances when you realize relief of suffering cannot be obtained without induction of unconsciousness, and that clinicians on the ground often don't spend too much time worrying about whether they are doing PPS or PSU. I also wonder that, with these definitions, and by describing PSU as a last resort practice, which it should be and I think by and large is used this way, one should argue that PSU should only be peformed after a trial of PPS, because how else can we be sure it is a last resort option? Which is another indication that trying to distinguish between these practices on the grounds of initial therapeutic goal (adequate sedation vs. coma) can't entirely account for real clinical practice - I think it's fuzzier. That said, there are times in which PSU is attempted from the get-go; for me it's when I conclude suffering is tremendous and death is very imminent (and I don't have hours or a couple days to tinker - or if I did it would be at the expense of ensuring a peaceful death) and you just go straight for deep sedation. Of course, I'd argue this is absolutely 'proportionate' when the alternative is a scenario when an imminently dying patient spends half their remaining hours suffering just so I can be 100% sure that I'm being 'proportionate.'

Which highlights the element of all this which I think they undersell in this paper: the question of imminence. It's actually barely mentioned, at least in frank terms. While they discuss ethical objections to PSU (as potentially death hastening, such as when artificial nutrition and hydration are withheld), such objections, to me, only have merit (which is not to say one has to agree with them) if one concludes that providing PSU is materially death-hastening (by weeks, months let's say). A declining, advanced cancer patient, bedbound, not taking much PO, who is developing altered mental status - this is someone who has days to maybe a couple weeks to live (generally speaking) - PSU without artificial nutritional support is unlikely to be death hastening, and if so by hours or a day or two. And if one is worried about hours or a day or two in dying cancer patients then we should all be debating about whether we should intubate and ventilate these patients to get them those precious days.

These questions have not been rigorously researched (there have been some preliminary attempts), and certainly would be difficult to study (e.g. prognoses of patients who have PSU performed, etc.). Along these lines the authors note that it's very difficult to tell in the palliative sedation literature what exact practice is being studied, due to the lack of agreed upon definitions of these practices. It's possible the authors don't believe imminence, per se, matters - it's less important than the refractory nature of the symptoms and lack of other options. Fair enough, but not foregrounding the importance of prognosis gives fuel to the fire that PSU is PAS-lite, or otherwise ethically suspicious. We all think in terms of risk-benefits; and the risk of a loss of two days vs 2 months, to me, are different.

Leaving my agenda aside here, the paper also gives important recommendations to all hospice and palliative care groups to establish sedation policies, procedures, checks, and quality control to both ensure the best possible care but to also mitigate potential for abuse or misinterpretation of these practices. I think one could also add we, as a community, should agree upon research definitions of these terms, to improve our ability to actually study sedation practices.

(Image is from an August Annals issue.)

ICU Delirium & Prognosis

2009-09-18T17:00:00.000-05:00

American Journal of Respiratory and Critical Care Medicine has a paper about the prognostic importance of delirium in ICU patients, and continues the thread of research we've been following recently about delirium and prognosis.

This study was a single-center (Yale) prospective cohort study of older (over 60 years) adults in an ICU, in which delirium was prospectively and rigorously assessed (by research nurses, using the CAM-ICU scale); ~300 consecutive eligible admissions were enrolled. They note that they included patients with 'coma/stupor' as delirious; I initiatlly assumed this implied patients who were spontaneously stuporous/comatose (due to a high grade encephalopathy from sepsis, etc.) as opposed to pharmacologically induced sedation/stupor. However as far as I could tell there were no such exclusions and these data apply to patients with delirium/coma from any cause. They basically looked at the number of days a patient was delirious/altered in the ICU, and correlated that with survival.

Patients (mean age 74 years, 31% with a diagnosis of dementia, 54% intubated, 82% received opioids or benzos in the ICU at some point, median ICU LOS 6 days, meidan hospital LOS 11 days, and median days of ICU delirium was 3). 16% of patients died in the ICU and 50% died by 1 year.

Yes, that's 50% 1 year survival for older patients admitted to an ICU, with or without delirium.

They did a mutlivariable Cox regression analysis and found that number of ICU delirium days were independently associated with shorter survival (hazard ratio); age, comorbidities, and severity of ICU illness were also independently associated with worse survival. Eye-balling median and 1-year survivals based on days of ICU delirium (this is me eye-balling a Kaplan Meier curve): median survival for ICU delirium lasting 5 days or longer was about 2 months with 1 year survival being about 35% for those with delirium 5+ days and 45% for those with 3-4 days. Patients without delirium did much better: 1 year survival was 75% (as far as I can tell the number of patients this represents is not shared).

This is further supporting evidence to the now vast pile of data indicating that delirium in multiple settings is a poor prognostic marker. To take these data at face value, being older, in an ICU, and having alterations in your mental status for more than 4 days implies a 50% 2 month mortality and 2/3 1 year mortality (and any ICU stay implies only a 50% chance of surviving a year). It's important to acknowledge that despite the good quality of the data collection for this type of research - prospective, used a validated assessment tool, all-comers were offered enrollment, etc. - it is still from a single institution and the absolute value of these numbers is not easy to generalize. That said, whether it's 2 months or 4 months or whatever: it's bad, and this study is as good as any recently to show that.

What do we do with this? I have always hummed and hahed about how to apply this sort of research at the bedside. We already know if you're 75 years old, and in an ICU, for any reason - it's a marker of high 1 year mortality. Which is not to say that you're likely to die in the ICU, and that going to an ICU isn't going to 'save you.' Most of these people survived the ICU, although most who had rocky ICU stays died within a few months. That, to me, is the real story - we can save you, but often for a relatively short period of time (and who knows what quality of life). Patients want to live, and be 'saved,' and all that good stuff, but we are doing them a disservice if we don't let them know that while we can 'save them,' and all that good stuff, it's usually not going to be for a long and healthy life. It's time to begin planning, and sorting through how you want to spend that time. A wise mentor once told me when talking about The ICU and older patients is that that the big question is not can this patient survive the ICU (most do and we have incredibly sophisticated systems in place to get people out of ICUs alive) but that can they survive it for what? And for how long? And while most patients want to live, knowing that they might be facing going through that again, and with likely little long-term benefit, many will choose not to do it again.

Anyway - the big etiologic question here, which may have a long term impact on how patients are treated, especially as pain and symptom meds do, indeed, cause/worsen/lengthen delirium, is whether the delirium itself causes the worse prognosis, or whether it's a passive marker of poor prognosis. If it's the delirium itself then anything to prevent or shorten it will make people live longer presumably: that will 1) hopefully be an impetus to actually do large/good trials of delirium treatment (in ICU and anywhere else - we need 'em), 2) raise the spectre of withholding symptom meds in hospitalized patients as they could be perceived as causing/worsening/lenghtening delirium and thus worsening long term prognosis?

(Thanks to Dr. Bob Arnold for alerting me to this.)

Refining Treatment Preferences For Patients Who Want "Everything"

2009-09-14T19:50:00.001-05:00

The Annals of Internal Medicine has a perspective article by palliative medicine communication gurus Drs. Tim Quill, Bob Arnold, and Tony Back which details an approach to discussing treatment preferences with patients who want "everything." When I think of a patient requesting "everything," I typically think of it as a response to a physician who offers the patient the choice of "doing nothing" if the patient's heart should stop or the alternative of "doing everything." Of course, patients pick up on this language and make certain assumptions based on the ambiguity and misrepresentation of these statements. If the patient who has been previously exposed to this type of dialogue is approached during a subsequent hospitalization in a more measured manner, they may still say, "do everything," or some may come up with it on their own. But what does "do everything" mean? Does it mean "I'm philosophically and/or religiously inclined to receive any and all life-prolonging measures no matter what type of suffering I'm going through or how I appear to my family, so keep me hooked up to 4 pressors on a ventilator until all my digits are blue and you're all watching the rhythm strip because you can't ausculate my heart sounds" or does it mean "do everything you can to stablize me so I can go home to die there" or something else?

Quill, Arnold, and Back distill their approach to this common scenario into six easily digestible steps, which includes attempting to 1) Understand what "doing everything" means to the patient, 2) Propose a philosophy of treatment, 3) Recommend a plan of treatment, 4) Support emotional responses, 5) Negotiate disagreements, and 6) Use a harm-reduction strategy for continued requests for burdensome treatments that are very unlikely to work.

The appeal of this approach to me is that it fits very well into how physicians think. The most essential part of this process is to refrain from interpreting the patient's request to "do everything" as a blanket consent for any medical therapy available to humankind. Rather, such a request should be considered akin to a clinical sign that requires more investigation. In step 1, the physician develops a "differential diagnosis" regarding the meaning of "everything" which includes potential affective, cognitive, spiritual, and family related factors. Table 2 of the article suggests appropriate questions that help to delineate the "diagnosis" (ie the meaning of "everything"). In this step, the patient's values, priorities, and goals are revealed. The patient knows these better than the physician. What they may not know (and what the physician should assess) is whether potential medical therapies will be consistent with values and priorities or if they will stand a chance to help them meet their goals.

So how do we translate these statements into an actionable plan of care upon which the patient and physician can agree? Step 2 represents the "currency exchange" between patient values/goals into a plan of treatment. They propose five general categories of treatment philosophies of "everything" (one example: "everything that has a reasonable chance of prolonging life, but not if it would increase the patient's suffering"). Based on Step 1, the physican can confirm that the patient agrees with the general philosophy. Once this is done, then the physician can decide which parts of the treatment plan are consistent with the philosophy and propose a strategy to the patient.

Step 4 of supporting emotional responses shouldn't really be a "step" but an infiltrative component that is vital to ensuring that the patient feels well supported (and probably improves the likelihood of success/agreement on the plan, but if agreement isn't reached, proceed to Step 5).

Step 6 describes a "harm-reduction strategy" for responding to requests for burdensome treatments that are unlikely to work (in the context of a "patient philosophy" of vitalism). Repeated badgering of the patient/family to reconsider DNR is discouraged in favor of keeping the patient a full code and considering a short code (but not a slow code).

The article is a quick read and it's an instant "teaching file" classic. Here are some questions to serve as discussion points (ie I want comments):

In the first few paragraphs, it's inferred that a patient request to "do everything" should prompt the physician to initiate the six step process (in addition to providing the patient adequate information about their illness and prognosis). Do you use techniques to avoid the "do everything" request altogether? If so, what are they?
How do you think patients respond to physician statements regarding treatment philosophies (see Table 1)? How stable do you think these philosophies are?
What do you think of the harm-reduction strategy? How does it fit into your hospital's futility policy (if your hospital has one)? Is a "short code" more ethically appropriate than a "slow code"?

If you liked this article, then you'll love "Mastering Communication with Seriously Ill Patients: Balancing Honesty with Empathy and Hope," by Back, Arnold, and James Tulsky (which should be mandatory reading for all clinicians in palliative care and is great for other clinicians as well).