Monday, October 20, 2014

It's on! SF Giants and GeriPal vs. KC Royals and Pallimed

KC BBQ meal we look forward to receiving from Pallimed
Christian Sinclair of Pallimed and Kansas City has challenged us to a friendly wager.  As many of you know, many of the bloggers at GeriPal (including me and Eric) are based in San Francisco.

The world series is the San Francisco Giants vs. the Kansas City Royals.  What an opportunity!

The basic rules are simple:

  1. For each loss in the series, the losing blog must write a post for the opposing blog.  So, for example, after the Giants win Game 1 Tuesday night, a Pallimed blogger will owe GeriPal a post, to be published on GeriPal.
  2. Timing doesn't have to be the same night, so if the Giants win the series 4 to 1, then Pallimed owes GeriPal 4 posts, and GeriPal owes Pallimed 1 post, to be written in a reasonable time frame.  If it's the same night, that's fine too. 
  3. At the end of the series, the losing blog must send a dinner themed from their city.  So for example, in the unlikely event that the Royals steal the series, we at GeriPal will send Pallimed a dinner of something like sourdough bread, Mt. Tam Cheese, and It's Its.  When the Giants win, we look forward to eating a fine BBQ meal from Joe's Kansas City.

We may negotiate the finer details, but those are the basics.

We accept your challenge...and can't wait for your 4 blog posts and barbecue!  Just don't be Bum(garner)ed when you lose!

Alex and Eric


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GeriPal Hits 2 Million Pageviews


The Places Where GeriPal is Read

Last week GeriPal hit 2 million pageviews.  We celebrated quietly when the counter showed a whole line of 0's, but I thought it would be worth creating a list of the top 25 most read posts to commemorate the occasion.  Enjoy!
  1. The Dangers of Fleet Enemas
  2. Length of Stay in Nursing Homes at the End of Life
  3. End Stage Dementia: A Terminal Disease Needing Palliative Care 
  4. What to give Uncle Ernie, Grandma Mabel and Great Aunt Rose? 
  5. Dying without Dialysis 
  6. Beers Criteria Contest: Submit the Craziest Medication Combinations 
  7. When Surrogates Override the DNR: A Terrific Geriatrics and Palliative Care Teaching Video 
  8. MMSE and Copyrights Part II: Is the MMSE Derivative of Some Other Work? 
  9. Atul Gawande New Yorker Article "Letting Go" 
  10. Coffee Is Bad For You. Coffee is Good For You. Why Am I So Confused? 
  11. Survival from severe sepsis: The infection is cured but all is not well 
  12. Why is Forest Laboratories discontinuing Namenda? 
  13. TAVR: Life-prolonging and palliative or risky and costly?
  14. A New Treatment For Atrial Fibrillation in the Elderly?: The (IR)relevance of Clincial Resarch to Geriatric Populations 
  15. Death of the Gerontological Nurse Practitioner: Part 1 of 2 
  16. Loneliness 
  17. Watchful Waiting or Surgery for Prostate Cancer? 
  18. “Elders?” “Older Adults?” “Seniors?” Language Matters 
  19. A Call for Hospice Reform: Nurse Practitioners Lead the Way 
  20. A Study of Dignity Therapy on Distress and the End-of-Life Experience 
  21. 3 Issues of Hospice 
  22. How do you explain hospice? 
  23. Being Accused of Murder 
  24. Inappropriate Medications in the Hospice Setting
  25. Copyrights and Copylefts in Medicine: The Case of the Wayward MMSE

by: Eric Widera (@ewidera)


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Friday, October 10, 2014

A Call for Maternalism in Medicine



by: Laura Petrillo @lpetrillz

After a recent family meeting, I received a piece of feedback from a social worker that took me by surprise:  "You were very maternalistic in there, but it worked," she said.

I reflected on the conversation we just stepped away from.  Our palliative care inpatient consult team had been asked to talk with the family of a patient who had been in the intensive care unit for weeks.  Mr. B* had severe vascular disease and a systemic infection that had caused his organs to shut down, and he was now being kept alive by a ventilator, vasopressors, dialysis, transfusions and artificial nutrition.  His legs had turned purple and cold the day before, so the surgeons had amputated both of them in an attempt to save his life.  Now the purple was beginning to creep up his abdomen, and the surgeons did not have any more procedures to offer.

We met the patient's surrogate decision maker, a young woman named Devon. She was working and in school through Mr. B's illness, and was exhausted and overwhelmed.  She told us that Mr. B owned a sailboat that he loved, and that he was independent and stubborn, still smoking up until he was admitted to the hospital, despite his atherosclerosis.  She told us that he was a fighter, and she hoped he was going to make a full recovery.  However, she realized his condition was very serious, and she said that if he were not going to ever get better, she did not want him to suffer. 

We listened.  And examined the patient.  And talked to the surgeons, who were also struggling-- they did not feel good about continuing aggressive measures since Mr. B's chance of recovery was getting slimmer by the day.  They worried he was suffering and that they were doing him harm, but they did not know how or when to stop, since every time they asked, Devon opted to keep doing "everything."

The surgeons brought us all together as a group to talk, the family and the medical teams.  We offered Devon our support, and acknowledged her hope that Mr. B would get better.  We gauged her understanding of his critical condition, and provided an update on the dearth of options.  We gently told her how sorry we were that Mr. B was dying.  We echoed her goal that he not suffer, and recommended that we shift our focus to measures to make him comfortable.  We did not provide a menu of options, but rather one course of action that reflected the patient and family's goals, the patient's condition, and a realistic assessment of what our medical interventions could achieve in his situation.

When the social worker told me I was "maternalistic" after the meeting, I initially chafed. I had been trained to scorn paternalism, the old school attitude in medicine that "doctor knows best," and that patients don't get a voice.  Over the past few decades, there has been a pendulum swing in American medicine toward patient autonomy, the idea that patients have a right to choose what happens to their bodies.  Ironically, the first instances of this were patients who did not want the resuscitation that their physicians were bent on providing, and wanted the right to die naturally or at least not be sustained on life support that prolonged death rather than extended life. Now, it seems the challenge is much more often that extraordinary measures are routine practice and patients have come to expect them, and physicians continue to offer "everything" until the patients, or their families on their behalf, decide when to stop. 

I thought that the social worker was gender-izing the concept of paternalism to be politically correct because I'm a woman, the way you would say "mailwoman" or "congressperson," and casting me in the paternalist lineage. But the more that I thought about it, the more I wondered whether maternalism might be something different and new, and in fact might be just what is needed sometimes-- a place for the pendulum to rest when all options are not equal, and physicians want to communicate a recommendation while also taking the values of the patient and family into account.

To be maternal is to listen, support, protect, guide.  Sometimes it can be just too hard for families to say "enough."  They fear feeling like they gave up, or brought about their loved one's death, even though it was the illness that robbed them.  A maternalistic doctor might relieve that burden, by recommending a specific course of action rather than providing options and staying on the sidelines, agnostic.  But a maternalistic doctor can only make recommendations because she has first listened, and gotten to know the goals and values of her patient, and then added to those to her medical knowledge and experience, much as Sulmasy recommends in his "substituted interests" model of surrogate decision making.  Of course, male physicians could be maternalistic too.  We rejected the paternalistic doctors of yore not because of their gender, but because they left patient input out of their decisions.

The transition to comfort-focused care went smoothly for Mr. B, and he died a few hours later, his loved ones holding his hands, and a nicotine patch on his arm.  When Devon hugged me and thanked us for caring for him until the end, I decided to take the maternalism comment as a compliment. 

* potentially identifying details have been altered to protect patient confidentiality
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Tuesday, October 7, 2014

Atul Gawande, just what the doctor ordered

by: Stephanie Rogers @SERogersMD

Atul Gawande is expanding the conversation about care at the end of life with his new book, Being Mortal. Will people take notice?



The introduction to his book came a few days ago in his opinion piece “The Best Possible Day,” in the New York Times. It fueled a series of emotions for me and I reread his 2010 New Yorker article “Letting Go: What should medicine do when it can’t save your life?

As a doctor who recently finished training in internal medicine, I had many stories like his from my time in the hospital. I saw patients and families who would go to great lengths to try to extend their life in spite of an exceedingly poor prognosis.

They continued to plea, “What else can we do?” and “What other therapies exist?“ Many aggressive treatment options were offered, despite the fact that it was unclear how much these interventions would extend their life, and many times they produced complications including pain, infections, and the inability to interact with their families.

It seemed to me that we were doing something wrong. Perhaps we were answering their questions incorrectly. Or maybe we, as physicians, weren’t asking the right ones.

I was particularly affected by what I saw in the intensive care units: numbers of frail, older adults who spent their final days on mechanical ventilation, with uncomfortable tubes and lines in their bodies. Their families kept asking for more options, more treatments, just anything that could give them a chance to live longer. We, as physicians, fumbled through discussing the more appropriate questions during these difficult times:
         • How did their loved one want to spend his final days?
         • What sorts of treatments were worth pain and suffering, and which interfered with things that                       were important to him?
         • If the patient knew he would die in one day, a week, a month or six months, how would he want to spend that time?


Now that I am in my specialty training in Geriatrics, the care for older adults, I know that the culture has to change. We have to become better at these conversations.

Not all decisions are weighted equally at the end of life. Some interventions offer no benefit and yet we use them, just to feel as if we are trying something. As a trainee, I am often nervous to not offer everything we have in our toolbox because I have learned from a scientifically-advanced medical culture that this is how we do things.

How does a cultural shift happen? Perhaps, it just takes one person who people respect to speak up- maybe a physician, who specializes in cancer surgery, who had his own struggles with the way his father died.

What if that person, who began speaking to us about this in The New Yorker years ago, was able to inspire a wider audience by being on The Daily Show with Jon Stewart, and writing one of this week’s most viewed articles on The New York Times website? Maybe, with Atul Gawande’s encouragement and his new book released today, we can begin to reframe our goals for dying and allow our patients to choose the way they live.

I’ve downloaded his book today on my kindle, and I welcome your comments as you read along beside me.
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Thursday, October 2, 2014

Do you think hearing loss is important in hospice and palliative care?



by: Alex Smith, @AlexSmithMD

Do you think age-related hearing loss is important in hospice and palliative care?  We'd like to know!  We're conducting a brief (less than 5 minute survey).  You have an opportunity to tell your stories about caring for patients and caregivers with hearing loss, if any. 

Here is the link: https://www.surveymonkey.com/s/TXMQW55

Please consider helping out.  And pass this link on to anyone you know in hospice and palliative care!  All members of the care team that work primarily in hospice and palliative care are welcome to participate (docs, nurses, chaplains, social workers, etc).  International responses are welcome!

This is an anonymous survey.  We will disseminate our findings on GeriPal.

Thank you!

Alex Smith, MD
Meg Wallhagen, PhD, GNP-BC
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Sunday, September 28, 2014

New POLST reflects evolution of how we talk about life sustaining treatment

by: Laura Petrillo (@lpetrillz)
The New California POLST form

There is increasing interest around the country in documenting patient preferences for life sustaining treatment, with the hope that patients may receive care in line with their goals and values during an emergency.  Many states in the US do this through Physician Order for Life Sustaining Treatment (POLST) programs, which are active or developing in all but five states [1].  California has had a law in place since 2008 that mandates honoring a POLST, and on October 1st, 2014, the state will roll out a new version, the first revision since 2011.  The changes are subtle, but there are definite shifts in language and emphasis that reflect larger themes.

Here we'll take a look at how the new California version compares to POLST equivalents already in use in other states, and what the changes suggest about how attitudes about this important topic are shifting in our community. 

What is a POLST? 

The POLST is an out of hospital physician’s order that indicates patient preferences for resuscitation and scope of treatment, intended to be completed for seriously ill or frail patients and to be followed by emergency medical providers.  The choices for scope of treatment range from full treatment to comfort-focused measures, and in California, patients can also list their preferences for artificial nutrition. To be valid, the form needs to be signed by a physician and the patient, or the patient’s legally recognized decision maker.

Why fill out a POLST? 

The goal of the POLST is to align the care that is provided in an emergency with what would be acceptable to a patient, to make sure that a patient's wishes are honored even when he can't speak for himself.  Recent data from Oregon show that patients who filled out a POLST and chose “Comfort Measures Only” were less likely to die in the hospital (6.4%), compared to 34.2% of patients who did not have a POLST form, and 44.2% of patients who completed a POLST and chose “Full Treatment” [2].

What’s new in this version and how is it compare to other states?

The most important changes are:

1) The order of options in the first two sections has changed. Previously, Section A gave options “Attempt Resuscitation/CPR,” followed by “Do Not Attempt Resuscitation/DNR (Allow Natural Death)." In Section B, the first choice was the least aggressive, “Comfort Measures Only,” followed by “Limited Additional Interventions” and “Full Treatment.” Now, to be more consistent, Sections A and B both proceed from most aggressive to least aggressive.

Does order matter? As previously discussed on GeriPal, when the “default” choice on an advance directive presented to seriously ill patients was comfort care, with the option to strike this out and choose full code instead, 80% of patients stuck with the default choice, compared to 61% who chose comfort care on a standard advance directive [3]. Though that was a much more deliberate suggestion of a default than simply having a particular option listed first, one can imagine that order might subtly influence decision making, and reinforce our cultural bias that full treatment/full code is the default for all patients. 

Of note, the Colorado POLST equivalent lists DNR first in Section A and "Comfort Measures” first in Section B, presenting the least aggressive options first.  Oregon, Minnesota and New York's POLST equivalents are discordant like California's was before the change, with "Full Code" first in Section A and "Comfort Care" first in Section B. My favorite example of subtle bias in presentation of options is in Idaho’s POLST, where the full treatment option is called “Aggressive Interventions.”

2) The scope of treatment choices in Section B were renamed: “Limited Additional Interventions” was changed to “Selective Treatment” and “Comfort Measures Only” was changed to “Comfort-Focused Treatment.”

The changes are positive, and make less aggressive options feel more like a shift of focus, rather than that things are being taken away or withheld. Contrast this to New York’s POLST equivalent, the MOLST, in which full treatment option is “No limitations on medical treatments: the patient will receive all needed treatments.”


3) In Section B, goal statements have been added after each of the options to expand on the aims of each option and serve as a springboard for discussion. For example, the goal of “Selective Treatment” is “Treating medical conditions while avoiding burdensome measures.”

This is an improvement over the previous version, where the descriptions of Section B options focused solely on the type of additional interventions (antibiotics, fluids, intubation) that each option allowed beyond the least aggressive option listed above it.

While the idea of including goals certainly exciting, it is not unprecedented in the POLST world. The Oregon POLST provides similarly succinct overviews of each treatment plan that are similar to California’s goal statements. But the mother of all goal-oriented POLSTs is New Jersey’s, which just has a blank space in section A, titled “Goals of care.” The form provides the suggestion that providers ask patients, “What are your hopes for the future? Examples include but not restricted to: Longevity, cure, remission or Better quality of life….”

The easy criticism of New Jersey’s approach is that patients are unlikely to know in advance what their goals would be in an emergency, and would likely have different goals depending on the situation. It is impossible to imagine every scenario (“Well, I’d want to be cardioverted if it were unstable atrial fibrillation with rapid rate, but if a piano dropped on my head from the sky, I'd want quality over quantity”). But bravo, NJ, for thinking broadly—everyone is glad to get more of a vision of the patient on the page rather than her feelings about a la carte feeding tubes.

4) The last major change is that section B gives the option of checking a box for a “Trial Period” under the full treatment option.

Another exciting development. The concept of time-limited trials is nicely laid out by Timothy Quill in this JAMA article: “an agreement between clinicians and a patient/family to use certain medical therapies over a defined period to see if the patient improves or deteriorates according to agreed-on clinical outcomes” [4].  It may seem obvious that it’s a good idea to check in periodically to see if the plan of care is achieving the patient and medical team’s goals, but it happens surprisingly infrequently in practice.  Though checking the box provides very nonspecific direction to future providers, including the suggestion of time limited trials in POLSTs to remind providers to reevaluate after starting a course of action is a terrific idea.

And that's a wrap! At first glance, the changes are relatively minor, but one can sense a tectonic shift beneath, with an overall move toward a focus on goals and reevaluation of whether treatments are aligned with goals, rather than such a specific treatment-focused menu.

What do you think of the new POLST?  Do you think it reflects how you talk about life-sustaining treatment with patients now, and if not, what could make it better?  Do you think it will have any effect on how you have these conversations in the future?   If you have experience with the other states' versions of POLST, we'd like to hear about that too!


References

1. National POLST website. Available at: http://www.polst.org/programs-in-your-state/.

2.  Fromme EK, Zive D, Schmidt TA, Cook JNB, Tolle SW. Association Between Physician Orders for Life-Sustaining Treatment for Scope of Treatment and In-Hospital Death in Oregon. J. Am. Geriatr. Soc. 2014;62(7):1246-1251.

3. Halpern SD, Loewenstein G, Volpp KG, et al. Default Options In Advance Directives Influence How Patients Set Goals For End-Of-Life Care. Heal. Aff. 2013;32 (2 ):408-417.

4. Quist TE, Holloway R. Time-limited trials near the end of life. JAMA 2011;306(13):1483-1484. Available at: http://dx.doi.org/10.1001/jama.2011.1413.

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Thursday, September 25, 2014

Can Someone with Debility or Adult Failure to Thrive still be Admitted to Hospice?



I’m hearing a lot of questions about whether someone with frailty, debility, or adult failure to thrive can still be admitted to hospice, especially since CMS will no longer beaccepting either debility or adult failure to thrive (AFTT) as a principal diagnosis on hospice claim forms starting on Oct. 1, 2014. The answer is YES and what follows is my attempt to help clarify the issue and secure my spot as a 2015 Hospice Hero (OK -- I made that award up).

The Difference Between the Principle Hospice Diagnosis and Hospice Eligibility

Shaida's Award for this Post
The key to untangling this question is to understand the difference between the principal hospice diagnosis and hospice eligibility. These are not the same, although they are often discussed as if they were. So what is the difference?

Briefly, the principal hospice diagnosis is the diagnosis (ICD 9 Code) that the certifying hospice physician determines to be the most contributory to the patient’s terminal condition or prognosis. This is listed on the hospice claims form and hospice providers are responsible for financial coverage of medications necessary for the palliation and management of this diagnosis and related conditions.

Medicare hospice eligibility requires that the patient’s attending physician and the hospice medical director certify that the patient is terminally ill and their prognosis is for a life expectancy of 6 months or less if the terminal illness runs its normal course. CMS has guidelines called local coverage determinations (LCDs) to help physicians determine a prognosis of six months or less (and therefore determine hospice eligibility). These are guidelines to help determine prognosis and are not rules or requirements for hospice admission (the LCDs are available on the CMS.gov website). CMS states “eligibility under the Medicare Hospice Benefit is based on the prognosis of the individual and not on a single diagnosis or multiple diagnoses.” In other words, there is no forbidden diagnosis when it comes to hospice eligibility (as long as that diagnosis leads to a prognosis of six months or less), BUT debility and AFTT should not be listed as the principal diagnosis on the hospice claims form.

Why is CMS no longer accepting debility or AFTT as a principal hospice diagnosis on the claims form? CMS states these diagnoses are associated with multiple underlying conditions. Instead of listing debility or AFTT as the principal diagnosis, hospices should list the underlying conditions that have caused debility and adult failure to thrive on the claims form (as principal and additional diagnosis) and they should pay for medications necessary for the palliation and management of all these conditions.

For those of you who are thinking to yourselves “that explanation wasn’t really brief,” you are right. For those of you who would like an even more detailed answer please refer to the table 1 below ---and maybe we should start an obsessive-compulsive hospice clinician support group?

A Case Example 

Getting back to our question “Can Someone with Debility or Adult Failure to Thrive be Admitted to Hospice?” Lets look at a case adapted from CMS guidance:
An 85 year old patient with dysphagia, decreased oral intake, malnutrition, weight loss, BMI of 18.6 upon admission, decreasing functional status, progressed from a walker to chair to bed in less than six months, has no underlying diagnoses other than frailty and adult failure to thrive. This patient was determined to be terminally ill with a prognosis of less than 6 months by the certifying physicians.

Can this patient be enrolled in hospice? Yes. The condition the hospice physician feels is most contributory to the terminal prognosis would be reported first on the hospice claim form as the principal hospice diagnosis, along with all other related conditions. The principal and additional diagnosis could include: malnutrition, dysphagia, muscle weakness. CMS has also clarified that debility and AFTT could be listed as additional diagnoses on the claims form (just not the principal diagnosis).

How is the patient hospice eligible? He would be eligible for hospice because two doctors certified that he is terminally ill with an expected prognosis of less than 6 months. These certifying physicians could use the “adult failure to thrive syndrome” or “non-disease specific decline in clinical status” hospice LCDs as guidelines to document hospice eligibility. AFTT could be listed as an additional (not primary) hospice diagnosis as described above.

So hopefully this has shed some light on the topic, and you can continue to be a hospice hero who provides invaluable hospice care to those who need it.

by: Shaida Talebreza Brandon (@ShaidaTalebreza)
Table 1: Differences Between Hospice Principle Diagnosis and Hospice Eligibility


       The principal diagnosis is the diagnosis (ICD 9 Code) that the certifying hospice physician determines to be the most contributory to the patient’s terminal condition
       (i.e. What would you list on the death certificate?)

       Hospices are to report this principal diagnosis (ICD 9 Code) on their claims forms

       CMS expects all of a patient’s coexisting or additional diagnoses (ICD9 Codes) related to the terminal illness or related conditions should be reported in the additional coding fields on the hospice claim

       Hospice providers are responsible for financial coverage of medications necessary for the palliation and management of all conditions related to the terminal prognosis (i. e. the terminal illness and related conditions --- or in other words --- the principal and additional diagnoses listed on the claims forms)

       Hospices should not use debility or adult failure to thrive as the principal diagnoses on the claims forms because these diagnoses are associated with multiple conditions.  Instead hospices should list the underlying conditions that have caused debility and adult failure to thrive on the claims form

       “Debility’’ and ‘‘adult failure to thrive’’ could be listed on the hospice claim as other, additional, or coexisting diagnoses.

·      We are not stating that individuals with the clinical manifestations of ‘‘debility’’ and ‘‘adult failure to thrive’’ are ineligible for hospice services under the Medicare Hospice Benefit. Eligibility is determined by the certifying physician and based on the review of the clinical records and comprehensive assessment.
       While hospice physicians use their clinical judgment to determine the principal diagnosis and related conditions, we do not require them to determine to the actual codes associated with those diagnoses for inclusion on the hospice claim. Hospices have the flexibility to determine how to take the physicians’ information about diagnoses and translate it into the appropriate codes on the claim.
       LCDs are guidelines to be used by hospice providers to help them determine hospice eligibility

       In other words: “Patients who meet the LCD guidelines are expected to have a life expectancy of six months or less if the terminal illness runs its normal course.”

       LCDs are NOT RULES or CRITERIA for hospice admission.  They are guidelines to help physicians determine prognosis of less than 6 months.
·      Notice: Hospice LCDs are not requirements for hospice admission.  To that point, Palmetto, doesn’t even have an LCD for cancer (as Ron Crossno , one of my hospice heroes, pointed out).

       The LCDs also state: “Some patients may not meet these guidelines, yet still have a life expectancy of 6 months or less. Coverage may be approved if documentation of clinical factors supporting a less than 6 month life expectancy not included in these guidelines is provided.”

       Documentation should “paint a picture” for the reviewer to clearly see why the patient is appropriate for hospice care.  The records should include observations and data, not merely conclusions

   Note: Palmetto, has an AFTT LCD that can be used to help determine hospice eligibility but AFTT would not be listed as the principal diagnosis on the hospice claims form.



CMS Emphasizes the Differences:
Hospice Principal Diagnosis
ICD9 Code

       These clarifications [i.e. not allowing debility or adult failure to thrive as principal diagnoses] are not intended to preclude any clinical judgment in determining a beneficiary’s eligibility for hospice services; rather these are clarifications regarding the reporting of diagnoses on the hospice claims
Hospice Eligibility
Local Coverage Determination

       LCD guidelines are intended to be used to identify any Medicare beneficiary whose current clinical status and anticipated progression of disease is more likely than not to result in a life expectancy of six months or less. LCDs are utilized to determine eligibility for Medicare hospice services and not to determine the appropriate diagnoses to code on hospice claims.



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Tuesday, September 23, 2014

Training doctors to be a little more like cab drivers



by: Alex Smith, @AlexSmithMD

As it's early in the year, we usually like to post about some advice for trainees, particularly fellows that are new to our geriatrics and palliative care services.

This year, let's focus on the goal of the first visit.  Regardless of the reason for consult, a primary goal of the first visit should always be "Get to Know the Patient."

This should not be hard.  Taxi drivers and barbers do this effortlessly (OK not all, but many.  And OK, my experience lately has been more with Uber drivers than taxi.  But I digress). 

The problem is that it runs counter to our medical training.  We are conditioned to get to the reason for the consult: having a goals of care discussion, introducing hospice, or treating the nausea.  To be sure, sometimes the symptoms are so severe you have to focus on them first, then get to know the patient later.  Often there is time, however, once the symptoms are under control, to get to know the patient.  And if you jump to the hospice discussion without getting to know the patient first, you and the patient are usually in for rough time.

As we've said before, palliative care and geriatrics are relationship-centered professions. We form strong relationships with patients so that we can have the difficult conversations with patients, when things get tough.

So how do you do this? 

  1. Pretend you are not a doctor.  Pretend you are driving a taxi.  Channel your inner cabbie.
  2. Ask about where they grew up.  "So, did you grow up around here?"
  3. Ask about family, "Are you married?  Been married?  Have kids?"
  4. Ask about jobs, "What kind of work did you do?"
Today we met a new patient (this patient granted permission to use potentially identifying details about him for this blog).  He was distraught and depressed by the cancer that was causing pain, waking him from sleep, and the loss of function associated with the disease.  His distress seemed to be everywhere we turned in our conversation.

It was remarkable, then, how he smiled and we smiled when we asked him about his work.  He was a musician, a drummer in fact, for a band called "Tower of Power".  We hadn't heard of it. 

"Heavy metal?"  We asked. 

"No. Soul." 

We pulled up the band using a streaming music service on our iPhones.  We played a tune through the iPhone speakers called, "What is hip?"

"So that's you on the drums?"  we asked.

"Yeah, that's me." 

Wow!  We had bonded. 

Faith Fitzgerald, former Dean of Students for the UC Davis School of Medicine, wrote a terrific essay bemoaning the loss of curiosity in medical training, and the need for integrating humanities into medicine.  She wrote:
I believe that it is curiosity that converts strangers (the objects of analysis) into people we can empathize with. To participate in the feelings and ideas of one’s patients—to empathize—one must be curious enough to know the patients: their characters, cultures, spiritual and physical responses, hopes, past, and social surrounds.  Truly curious people go beyond science into art, history, literature, and language as part of the practice of medicine. Both the science and the art of medicine are advanced by curiosity.
Completely agree.  This is one of my favorite essays ever (h/t to Guy Micco). 

And I would add that sometimes it's simpler than mixing in the art, history, or literature with the physician.  Sometimes you need a little more cab driver.
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Friday, September 19, 2014

Hey Dr. Emanuel: you might not want to die when you're 75!

 



by: Alex Smith, @alexsmithMD

You may have heard of a new article in the Atlantic by Dr. Ezekiel Emanuel provocatively titled, "Why I Hope to Die at 75". 

Please take a moment to read it

If you haven't read it, and are still reading this post, I get it, you're too busy. I love the Atlantic but find their articles too long too.  So I will summarize:
  • When we get old, we get weak in the mind and body.  Life is no longer vibrant.  Our contributions dwindle 
  • Dr. Emanuel would not want to prolong his life past 75
  • This does not mean he wants to commit suicide, it means he does not favor spending resources to extend his life after age 75
My initial impression, upon hearing the title, was...yuck!  This plays into every ageist stereotype - and from a renowned bioethicist no less!

On further reading, however, I realized that his argument is much more nuanced and complex than his hammer of a title would suggest. 
  • He describes something we have studied and blogged about: the fact that we are living longer lives also means that we are living with longer periods of disability and dementia prior to death. 
  • He presents data on optimal productivity, as measured by accomplishments of really smart people like Nobel laureates. 
  • He acknowledges counter arguments, including the instinctual will to live.
I applaud him for taking a bold and nuanced stand on a national discussion that has been lacking in thoughtful and nuanced conversation.  My sense is that he really wanted to poke a stick into a hornets nest and shake it. 

So in the spirit of responding to that challenge, here  are my major issues with this piece. 

First, with all due respect, we should not care that much about what Dr. Emanuel wants 18 years from now.  The right people to ask about whether life is worth living after age 75 are not 57 year olds, like Dr. Emanuel, forecasting what life will be like when they are 75.  The right people to ask are seniors who are living with the conditions he describes, disability and cognitive impairment. 

We asked 62 older Chinese, white, African American, and Latino older adults, mostly in their 80s or older, who had a disability requiring assistance from someone else for daily care to rate their quality of life.  The majority rated it good or better.  No one gave the worst rating.

What we exposed is the older persons version of the disability paradox.  Studies have shown that healthy people think that being paralyzed would be awful.  But if you ask people with severe or persistent disabilities to rate their quality of life, many rate it good or excellent.

A good quality of life is possible in late life disability, with support. 

Second, I suspect that we would agree that more resources should be directed toward supporting people older than 75, rather than trying to endlessly prolong life.

I worry, however, about the message that this title sends. It stokes fear and provides easy fodder for critics of health care reform and palliative care.  Consider some of the tweets:

Third, the age of 75 is an arbitrary cutoff.  There are many remarkably healthy 80 year olds, and many frail and disabled 65 year olds.  The arbitrariness of the age limit undercuts the argument.

Finally, we are not all Nobel aspirants.  Dr. Emanuel is a fantastically accomplished person, from a fantastically accomplished family (brother Rahm Emanuel is Mayor of Chicago and former chief of staff to President Obama). 

The productivity based criteria for distributing resources doesn't seem right for the rest of us (mere mortals) who look forward to the life stage where we may not be as productive, but with support, can find ways to contribute.
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Thursday, September 18, 2014

New IOM Report on Dying in America


by: Alex Smith @alexsmithMD

I'd like to draw GeriPal readers' attention to the new report issued by the Institute of Medicine titled, "Dying in America: Improving Quality and Honoring Individual Preferences Near the End of Life."

This report represents the culmination of a huge amount of work by incredibly smart people.  Many of these people we know well, including Diane Meier, James Tulsky, Bernie Lo, Jean Kutner, Christian Sinclair.  Other folks contributed in different ways, like Amy Kelley and Melissa Aldridge who wrote a commissioned paper, and Susan Block, Betty Farrell, VJ Periyakoil, and Joanne Wolf who contributed to reviewing the draft.

The last report, "Approaching Death: Improving Care at the End of Life" was published in 1997, and served as a major road map for improving palliative and hospice care in this country.

I will use this brief post to review some preliminary thoughts, having read through the summary materials available on the IOM website.  I have only started to dive into the full report (available for download for free).  I will follow up with a longer post or perhaps series of posts as I make my way through the full report (while studying for Int Med boards!). 

Early points to consider:
  • This report has already generated a considerable amount of press.  Christian Sinclair is keeping a running tally on his Pallimed post here.  It remains to be seen - how much will this report reshape and redirect the national conversation about dying in America?  I'm hopeful.
  • Most of the hot press focuses on how our health care system is broken, and not serving the needs of dying patients.  This is a frame/spin that has the potential to gain traction.
  • The framing for the preface and introduction hits home the timeliness of this report in the face of the "death panels" furor, and subsequent stripping from the Affordable Care Act of proposed Medicare payments to doctors for advance care planning conversations.
  • Despite sustained efforts to change the public narrative about palliative care from one about dying to one about living with serious illness, including a terrific piece in the WSJ by Diane Meier, this task force and publication is still about dying and end-of-life care.  Perhaps the next report will be tasked to examine care for persons with serious illness, rather than end of life care.
  • The authors made an important choice in the framing of one strong leading section about optimal care being "Patient-centered and family oriented care."  This is a great frame and thoughtful word choice.  It's just not possible to have both the patient and the family be the unit of care - too many times their goals and preferences are at odds.  This phrasing allows for focusing on the patient within the context of the family.  Nice.
  • Geriatric palliative care is a major focus of the report.  They note in all summary materials that dying in America is increasingly characterized by a long term progression of chronic conditions and frailty associated with aging.  Recommendations include greater integration of medical and social services (and payment for such), support for caregivers, and ramping up of palliative care services in nursing homes and home-based care programs.
  • Prognosis is a major focus, with several mentions of ePrognosis.
  • Advance care planning and preparation for in-the-moment decision making is a strong focus, with an emphasis on improving the quality of patient-clinician interaction (and reimbursement!).
  • The brief summary statement starts with a concern about unequal distribution of services and hints at disparities by race/ethnicity.  I'm looking forward to reading more about this important area as disparities don't seem to be getting as much attention as other areas in the press about the report.
  • The recommendation to move away from fee-for-service medical care is probably the most ambitious recommendation I've read about so far.
More to follow, please give your initial impressions in the comments!
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Monday, September 15, 2014

Competitive Bidding? Is it really competitive or making it harder for patients to get what they need


Over the last few months, ever since Medicare started its competitive bidding process  my colleagues and I, in the UCSF Housecalls program have had a harder time getting our homebound patients the durable medical equipment (DME) they need.   The purpose behind the competitive bidding process seemed like a good idea--lower the costs and reduce fraud that has been occurring with DME.

From the Medicare site:
"The program:
  • Helps you and Medicare save money
  • Ensures that you have access to quality medical equipment, supplies, and services from suppliers you can trust
  • Helps limit fraud and abuse in the Medicare Program"
But in reality, the effects have created less competition, worse access, worse service, and patients dying or declining functionally because of difficulty getting much needed equipment. 

Case in point: a 90 yo woman died from advanced dementia and multiple worsening pressure ulcers, and was not able to get the Alternating pressure pump she needed for her hospital bed. 

Here in San Francisco, the number of DME companies from which we can choose has gotten smaller and smaller.  Some refuse to work with UCSF.  Some have a turn around time of over 1 month.  How do you justify that delay and simultaneously explain and document why someone's wounds are not healing.  And all of this is occuring, without yet talking about the increasing demands regarding documentation for equipment.  The Medicare website is clear about documentation requirements, yet DME companies are coming up with their own format and requirements.  And again, this delays the receipt of much needed DME. 

To say that this is frustrating is an understatement.  But even more importantly, a policy aimed at saving costs is actually hurting patients.  Somehow I can't get my patient a hospital bed, yet I continue to get faxes from DME companies claiming that my patient with dementia who can't answer the phone ordered a back brace, or better yet a penis pump for erectile dysfunction.  It seems that we may need to refocus or better yet, rethink the goals of the competitive bidding process.

As our Housecalls group prepares to write letters to our Congressmen and women, we wonder if any of you around the country are experiencing similar phenomena?  Or is this just happening here in Northern California.

Please share your stories.


by: Carla Perissinotto MD

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A False Hope: Artificial Nutrition in the Dying Patient


My patient was dying and his family was terrified. Riddled with abdominal tumors and engorged gastric blood vessels, Mr. G, a 54 year old Korean man with advanced hepatitis B-related liver cancer would not survive this hospitalization. For weeks, he had suffered from progressive abdominal pain and distention, and had recently lost his desire for food and the ability to take anything by mouth. He had difficulty swallowing anything, and he felt like his abdomen was going to explode when he tried.

His large extended family, his wife in particular, was preoccupied with feeding him. On admission to the hospital she requested placement of a tube or an IV to deliver nutrition since he was no longer eating. She was adamant that we intervene soon, since it was clear to them that he was deteriorating and didn’t have much time. It was hard enough to watch him grow sicker with cancer, but they were not willing to watch him starve to death.

 But, of course, he wasn’t actually starving to death. He was dying of cancer.

Anorexia at the end of life can be one of the most agonizing parts of the dying process for families to cope with. As one of the palliative medicine fellows at UCSF, I am part of a consult service that is often called upon to help other doctors navigate the discussion around artificial nutrition at the end of life. Despite an awareness of what the medical literature tells us about the risks and benefits of these interventions, I struggle with how tough it is to counsel and guide grief stricken families through these complex decisions.

Is it ethically right to subject a dying patient to the surgical placement of a feeding tube when you feel strongly there is no benefit to be gained? What if if the family insists? Even within the team of providers, there isn't always agreement. My attending felt that the moral distress of the family was so grave that perhaps feeding tube placement might be reasonable as a way to give them peace and avoid conflict. But this patient was at the very end of his life, and I was not convinced.

I listened to their concerns and assessed their understanding of his disease (they knew he was dying) before presenting them with information on what we know about artificial nutrition in patients with advanced cancer. I emphasized that there is no evidence it improves survival, quality of life, nutritional or functional status and may in fact hasten death, if long term complications arise as they do 32-70% of the time. Both tube feeds and TPN can contribute to patient discomfort, decreased mobility and the possible need for restraints.

There is evidence that surrogate decision makers tend to overestimate the benefits while underestimating the risks of artificial nutrition. In one study the majority of patients had no improvement in quality of life after feeding tube placement according to caregiver report. In another study, physicians assessed that artificial nutrition was very unlikely to improve quality of life in cancer patients who survived 3 months or less.

While Mrs. G seemed interested in the information I offered, she continued to demand that we intervene. The patient, depressed and scared, was not interested in weighing in on the decision and looked to his wife to advocate for him. My recommendation that we focus on comfort instead of pursuing artificial nutrition given the risks and benefits was not enough to convince her that it was not starvation that was killing her husband. She explained to me that food was the center of the their most celebrated ritual -- a weekly gathering of extended family for Sunday night dinner -- and the thought of him dying with an empty stomach was almost as distressing as his death itself.

Of course people are tortured by the concept of “starvation” of their dying loved one; food is the basis of life and defines how we show love for each other. But when a dying person can no longer eat, families can be counseled that showing love in other ways -- like respecting the bodies rejection of food, is possible and essential. I explained that artificial nutrition is not food, but rather an industry manufactured mixture of carbohydrates, protein and lipids. In patients whose bodies were close to dying from advanced cancer, food becomes unhelpful and unnecessary. Artificial nutrition, simply put, is not food.

The loss of appetite and the catabolic state that can accompany advanced illness is natural part of the dying process -- and in fact it can even have benefits. The ketotic state generated by the reduction of readily available calories can itself produce a sense of euphoria and is thought to be an endogenous mechanism to ease suffering when we need it the most.

In Jessica Zitter’s recent NYTimes Well Blog entry, she offers a different perspective on the feeding of our loved ones at the end of life, one couched in the natural history of humanity and bedside caregiving. She writes that for thousands of years, people have hand fed their dying loved ones until their bodies were unable to take more.
 “But hand feeding has increasingly become a quaint piece of human history. We fed until they would take no more, and knew that we had done everything we could. But with the feeding tube, we can, and feel we must, keep going. Patients frequently die with plastic tubes weaving mysteriously under their gowns, entering bodies at unnatural angles, rendering them a little more alien to us. Those who are most needed sit a little further away from the bed, afraid to dislodge tubes that are supposedly keeping their loved one alive. And the patient’s mouth will usually remain dry and empty until the end.” 

In our data-driven approach to complex decision making, this refreshingly simple and rational perspective was helpful in my own approach to this issue. The image of directly hand-feeding our sick loved ones until their bodies aren’t able to eat any more is powerful and timeless. It comes from a basic nurturing instinct of our collective existence, one without G-tubes and PICC lines. It is a comforting reminder that death is as old as humanity and since the beginning of time no human soul has escaped its inevitability.

 Mr. G died peacefully and comfortably in the hospital before any final decision regarding artificial nutrition was made. In his final days he had a few sips of water but remained unable to swallow much else. While it was not the outcome anyone had ever wished for him, I’m certain that we did him and his family a service by engaging them in a prolonged discussion about artificial nutrition over several days rather than immediately subjecting him to a futile procedure.

Of course, it would have been simpler to feed him artificially. While the fee-for-service, time-crunched medical world we operate in certainly would have favored a more interventional approach over the hours spent talking with the family, it would have undoubtedly been of little benefit -- and possibly caused harm -- to our dying patient.


 by Colin Scibetta, MD (@colinscibetta)


References

1 ) Cervo FA, Bryan L, Farber S. To PEG or not to PEG: a review of evidence for placing feeding tubes in advanced dementia and the decision-making process. Geriatrics. 2006;61(6):30–35.

2) Mitchell SL, Berkowitz RE, Lawson FM, Lipsitz LA. A cross-national survey of tube-feeding decisions in cognitively impaired older persons.J Am Geriatr Soc. 2000;48(4):391–397.

3) http://well.blogs.nytimes.com/?s=dying

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