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Helen Kao at Geripal recently wrote a thoughtful post which highlights some of the flaws in the California POLST form. It's worth a read and I agree with her comments.  (And even though I use "POLST" here, I agree with her thoughts on using "POST" instead.)

For jurisdictions which are considering the establishment of POLST, it is important to consider the experience of other states as new forms are designed and legislation is drafted. I live in one of the many states which is in the process of developing a program. In spite of the weaknesses of forms currently in use in other places, PO(L)ST/MO(L)ST remains a very helpful tool with new research continuing to back its utility.  For instance, consider a recent study published in the Journal of the American Geriatrics Society which demonstrated high consistency between treatments provided to nursing facility residents and orders recorded on POLST forms. The study found that overall, POLST orders were consistent with treatments provided 94% of the time. Consistency rates were especially high for resuscitation orders. Consistency rates were slightly lower for antibiotic use and much more modest for feeding tubes use. 

Reasons for inconsistencies between orders and treatments should be evaluated further.  It's unclear that improving the form itself would reduce these inconsistencies.  Patients' preferences sometimes change and sometimes patients want their surrogate to have the leeway to change orders after the patient loses capacity (perhaps using a "best interest" standard of decision-making at that time rather than a pure "substituted judgment" standard). 

I hope that my state will "get it right the first time" taking into account the experiences of others. However I know that it is impossible to get it completely right the first time. Therefore, I hope that any legislation approved will include a process for modification of the forms which does not require the wheel to be reinvented down the road.

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The illness and death of the iconic Steve Jobs have stimulated much conversation both online and off. I won't rehash that now.

In case you missed it, NYT published the eulogy delivered by Steve's sister, Mona Simpson, who is a novelist and English professor.

"One time when Steve had contracted a tenacious pneumonia his doctor forbid everything — even ice. We were in a standard I.C.U. unit. Steve, who generally disliked cutting in line or dropping his own name, confessed that this once, he’d like to be treated a little specially.

I told him: Steve, this is special treatment.

He leaned over to me, and said: “I want it to be a little more special.”

Intubated, when he couldn’t talk, he asked for a notepad. He sketched devices to hold an iPad in a hospital bed. He designed new fluid monitors and x-ray equipment. He redrew that not-quite-special-enough hospital unit. And every time his wife walked into the room, I watched his smile remake itself on his face.

For the really big, big things, you have to trust me, he wrote on his sketchpad. He looked up. You have to.

By that, he meant that we should disobey the doctors and give him a piece of ice."

A remarkable blending of the mundane with the extraordinary. He put his two pant legs on and wanted his ice chips just like everyone else.

Oh, how I'd love to see those drawings.

The eulogy hints at how Jobs' illness and treatments interacted with his goals of care (which I'm guessing he was able to clearly define) and quality of life. Given the amount of discussion in our society which surrounded his illness and death, how special might it be to know how he went about making various decisions related to his health care? That could be a beautiful contribution to our society. There is no doubt that limitless financial resources played a role in the care which he received, but he wasn't in the ICU or even the hospital when he died.

"We all — in the end — die in medias res. In the middle of a story. Of many stories."

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(From http://www.thedesignwork.com/)



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Dusting off the Blogger account and checking in......

JCO published a population-based snapshot that looks at the characteristics of patients with cancer who visited emergency departments in North Carolina during 2008. Lung cancer was the most common cancer identified in visits by a significant margin while breast, prostate, and colorectal cancer were each identifed in a smaller number of visits. Patients with lung cancer were more likely to be admitted to the hospital with a total of 63% of all ED visits for patients with cancer resulting in an admission. The top three complaints included pain, dyspnea, and gastrointestinal complaints. More ED visits occurred during night and weekend hours than regular office hours.

Few brief thoughts/questions to ponder:

• What percentage of the ED visits were preventable? What systems could be introduced to prevent the visits? (Urgent clinic availability, telemedicine, enhanced home health, etc)
• Would these system changes result in a more timely manner and would that result in reduced need for hospital admissions?
• As a palliative care clinician, it's not a surprise to see lung cancer disproportionately represented. One of the results of the Temel et al study regarding palliative care involvement from the time of metastatic NSCLC diagnosis was reduced hospital admissions/ED visits. It's not clear what the "mechanism of action" is, but improved access to a team that can help with the top symptoms certainly is one plausible hypothesis.
• What is the "right number" of appropriate ED visits/hospital admissions? Hard to say, but palliative care as a field should actively work to help our oncology colleagues to push the numbers as low as possible. As much as I like my ED colleagues, the ED is not a fun place to be.

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NEJM published a perspective piece where the author briefly describes recent evolution of certain terms within medicine which may resonate with you.

"Patients are no longer patients, but rather “customers” or “consumers.” Doctors and nurses have been transmuted into “providers.” These descriptors have been widely adopted in the media, medical journals, and even on clinical rounds. Yet the terms are not synonymous. The word “patient” comes from patiens, meaning suffering or bearing an affliction. Doctor is derived from docere, meaning to teach, and nurse from nutrire, to nurture. These terms have been used for more than three centuries."

"The words “consumer” and “provider” are reductionist; they ignore the essential psychological, spiritual, and humanistic dimensions of the relationship — the aspects that traditionally made medicine a “calling,” in which altruism overshadowed personal gain."

The terms "providers" and "consumers" do strike me as "health care industry"-centered terms which have served to frame the discussion in a way that is favorable to said industry.  Hopefully, the terms (especially "consumers") don't advance any further in the lexicon and maybe more feedback needs to be given to media sources regarding better terms to use.

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NEJM presents a case of a man found to have a primary lung cancer and a solitary brain metastasis.  The discussion regarding management of the patient is noteworthy, especially the possible role of surgery and a brief discussion regarding the use of tyrosine kinase inhibitors.

The palliative care consultant should be aware of the available case series which suggest that a minority of patients might have a longer survival than what is usually expected in patients with brain mets.  (See Table 1 in the article.)  In the case series, patients received aggressive surgical intervention for the brain met and aggressive attempt at locoregional control of the primary cancer.

The article provides some guidance for selection of appropriate patients for aggressive disease-based management.  No particular quality of life outcomes are mentioned related to aggressive surgical management.

The bottom line dilemma: This is a scenario where multidisciplinary/multimodality management may give a small number of patients a chance at longer term survival.  The approach may be worthwhile to some, but talking about prognosis on multiple levels (survival, anticipated quality of life/burden of procedures) is essential.  I cannot remember encountering this scenario recently, but a palliative care consult would be appropriate in any patient with Stage IV lung cancer.  It's possible that the complexities of therapy and communication surrounding prognosis may only increase the usefulness of palliative care in this scenario.

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The NPR show Tell Me More has a week long series on issues surrounding aging and end of life.

Today, the show highlighted the documentary Serving Life about care provided to inmates at Angola Penitentiary in Louisiana.  The documentary aired this summer on the Oprah Winfrey Network. 

Also, see this recent perspective piece from Annals of Internal Medicine which addresses the issue of compassionate release of prisoners near the end of life.

Pallimed has featured stories on palliative care in prisons previously (see search results for "prison" here).

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by Lyle Fettig

The Journal of Clinical Oncology published a Swedish study which examines correlation between patients being informed of imminent death status and other palliative care quality outcome measures. In the study, 91% of patients were informed of their imminent death status.  How was this measured?  Sweden has a national palliative care registry which is described in the study text (click the little Union Jack at the top right of the page to view the front page in English) :

This online register was completed by the physician and/or nurse responsible for the patient's care during the last week of life, although HCPs were not aware of the research question of this study. The design of the SRPC Web questionnaire does not allow any missing data at submission. The Web questionnaire is based on the 11 principles constituting good death as defined by the British Geriatrics Society and was designed to be used in any care setting, independent of diagnosis, with the intent to look retrospectively at important aspects of care delivered during the last week of life. The 25 items on the SRPC include 14 questions that cover background data of patient and reporting unit and three questions that cover items not considered relevant to the aim of this study (ie, use of visual analog or numeric rating scales during last week of life, frequency of pressure ulcers, and staff reflection). The remaining eight questions covering, for example, degree of autonomy, information about imminent death, symptom control, parenteral as needed (ie, pro re nata or PRN) prescriptions, and preferred location at time of death, were included in the analysis in this study.

The ACP Hospitalist Blog commented on this study in more detail right after the study was released.  I'm going to keep my comments on the results brief.  The bottom line was no surprise.  Being informed of imminent death status correlated positively with more prn symptomatic medication orders, family being informed of imminent death status as well as being offered bereavement services, and patients recorded as dying in their preferred location.  Being informed did not correlate with increased anxiety or pain.  Minor methodological issues aside, this is yet more data (need we more?) to suggest that we should get over the worry about the effect of prognostic information on patients, even at the very end. When we don't sensitively explore patients' wishes for prognostic information and then give them info when they want it, it's usually because of our own discomfort rather than a protective effect for the patient.

What really strikes me about this study though is the existence of the database which made the study possible.  Considering the fact that I would struggle to access many of these data at my own institution, it's amazing that Sweden has a national database and that over 13,000 subjects could be included in the study.  Sweden is not unique in their attempt to measure various outcomes on a population level near the end of life.  See this Canadian study looking at the trajectory of performance status and symptom scores in patients with cancer in the last six months of life. 

Would something like this be possible in the United States? Could we develop a common repository for palliative care outcome measurement for individual patients? What are the true patient-centered outcomes which matter most to our patients and families when confronted with serious illness? 

These questions don't exist in a vacuum and should be viewed within the context of the Accountable Care Act and evolving healthcare system.  The Department of Health and Human Services recently released final rules for Accountable Care Organizations.  The rules document describes 33 quality outcomes which ACO's will need to report in order to qualify for "shared savings" above and beyond Medicare Part A and B reimbursements (see page 324). In the first year of the program, merely reporting all 33 outcomes will be sufficient to qualify for the "shared savings" payments.  In subsequent years, the ACO will need to meet a certain standard to qualify.

Take note of the first ten quality outcomes (all but the last three will be measured by patient survey data):

• Getting Timely Care, Appointments, and Information
• How Well Your Doctors Communicate
• Patients' Rating of Doctor
• Access to Specialists
• Health Promotion and Education
• Shared Decision Making
• Health Status/Functional Status
• Risk-Standardized, All Condition Readmission
• Ambulatory Sensitive Conditions Admissions: Chronic Obstructive Pulmonary Disease
• Ambulatory Sensitive Conditions Admissions: Congestive Heart Failure

The majority of these outcomes are near and dear to palliative care- don't we aim for these day-in, day-out? Palliative care teams can directly influence all of these outcomes for individual patients but also indirectly through local palliative care educational and quality improvement projects.  What other measurable palliative care outcomes correlate with each of these outcomes.  Could some of those other outcomes become standard in future ACO rules?  If you want to help the field (and the American healthcare system) take one small step in that direction, make sure your program applies for TJC Advanced Certification.  In the process, your program will be required to collect/analyze at least four palliative care performance measures on a continuous basis.  High penetrance of TJC Palliative Care Advanced Certification may lead TJC to build palliative care standards into the usual accreditation process for hospitals, etc.   

While I'm rambling on about everything under the sun, the Swedish Palliative Care Registry has a second questionairre that is filled out yearly at a program level (rather than specific to individual patients).  We do already have a registry similar to this: The CAPC National Palliative Care Registry.  Your program should sign up for that, too, if it hasn't already.

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by Holly Yang

On September 1st 2011, the Joint Commission started certifying hospital-based Palliative Care Programs!  It is open to all Joint Commission accredited hospitals including long-term acute care care and children's hospitals. The standards for certification were based on the National Consensus Project's Clinical Practice Guidelines for Palliative Care and A National Framework and Preferred Practices for Palliative and Hospice Care Quality from the National Quality Forum. For previous comments on the importance of this see Christian's post from spring when it was announced.

 It is "designed to recognize hospital inpatient programs that demonstrate exceptional patient and family-centered care in order to optimize the quality of life for patients with serious illness. Palliative care involves addressing physical, emotional, social and spiritual needs and facilitating patient autonomy, access to information and choice."

The full text is here, but some of the highlights of the requirements are (I'm paraphrasing, so please see the complete text for all the little words that make a big difference):

• 24/7 coverage - by phone on nights and weekends, with availability of someone to come in to see the patient if necessary, and "must be able to provide the same level of palliative care services during nights/weekends as during normal weekday hours."
• See patients - At least 10 in the past and at least one during the on-site review
• Use evidenced-based approach to guide care (and/or practice guidelines to deliver care using a standardized method)
• Have the ability to direct clinical management and coordinate care
• Have an IDT (interdisciplinary team) and follow an organized approach to deliver care
• QI  - Improve performance by collecting performance measurement data over time (at least 4 months' worth). No specific tools, but should be "evidenced-based, relevant, valid and reliable"