Thursday, November 5, 2015

An Update from the Hill: Advancing the Palliative Care and Hospice Education and Training Act (PCHETA)

Washington D.C. was an exciting place at the end of October. Sure there was a whirlwind deal to shore up the budget and avoid a crisis over the next two years.  And there was the resignation of Speaker Boehner and election of Speaker Ryan. But more importantly, AAHPM was in town to discuss the Palliative Care and Hospice Education and Training Act or PCHETA.

The take home from AAHPM fly-in is this:  Just as the construction on the Capital Dome is slow going but advancing, PCHETA is moving forward.  Progress is being made and we have MOMENTUM. Participants described constituent meetings with legislators and their staff as productive.  The legislature knows more and more about PCHETA and understands the issues better.

The PCHETA bill was first described on GeriPal in 2012. For those who think, "why is this important bill not already law"  it is important to recognize that a lot of good work has happened.

1. The PCHETA bill of 2015, which was introduced by Representatives Engel (D-NY) and Reed (R-NY) in the House as HR 3119 is a better bill.
In addition to the key provisions such as Palliative Care and Hospice Education Centers, Academic Career Awards, and Career Incentive Awards described in GeriPal's previous post, the new bill includes:
  • Improved federal supported research in palliative care
  • Training for more non-physician providers with special preferences for nursing education in palliative care in existing training programs
  • A national palliative care public education and awareness campaign

2. The PCHETA bill has more support than ever.
In 2015 the American Cancer Society- Cancer Action Network added it's support to the bill and The Patient Quality of Life Coalition advocated for the bill during its advocacy day this July and went on to begin its first ever ad campaign in support of PCHETA.  Over 30 key health care organizations support PCHETA including the American Academy of Hospice and Palliative Medicine, the American Geriatrics Society, the American Cancer Society's Cancer Action Network, the Hospice and Palliative Nurses Association, the National Hospice and Palliative Care Organization and many more.

3.  The PCHETA bill has bipartisan legislative support.
This is not a one-party bill.  This bill is important for patients with serious illness throughout the US.  Here is a chance for legislators to work together across the aisle.  Several members described their personal experiences with loved ones who were ill.

Watch for the bill to be introduced soon in the Senate.  When that happens, it is time for you to act.  Make your voice heard and advocate for better hospice and palliative care education and research as well as adequate workforce to meet the needs of an aging population with chronic illness.

by: Paul Tatum
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Monday, November 2, 2015

Recognizing the Incurable in Ancient Egypt

by Jeffrey M Levine MD

The art of medicine is as old as human civilization, and what we think is new has often been done before. When researching the history of wound care I came across an interesting historical antecedent to today’s palliative care practices. I found it in the library of the New York Academy of Medicine in Manhattan, in a translation of an ancient Egyptian medical scroll, the Smith Papyrus, pictured above.

During the American Civil War, an Egyptologist named Edwin Smith acquired the scroll and brought it to the United States where it subsequently found a home at the Academy on Fifth Avenue. The document is roughly fifteen feet long and three feet wide, and has writing on both the front and back. The scroll is made of papyrus, an ancient form of paper made from fibers of a plant native to the Nile region. Written with a reed pen, the text is a simplified form of Egyptian writing known as hieratics. The script differs from formal hieroglyphics which were more complex and painstaking to write. Documents reflecting daily mundane affairs were recorded in hieratic script, whereas temples, monuments, and official documents were written in the more readily recognizable hieroglyphics.

Tradition holds that information in the Smith Papyrus was passed down from the time of the Pyramids, nearly 5000 years ago. The original author might have been Imhotep, high priest to the sun god Ra and medical advisor to the pharaohs, and the earliest physician in human history whose name we know. Throughout ancient Egyptian civilization, Imhotep was viewed as a god who obtained his knowledge of medicine directly from the heavens. The Papyrus contains 48 clinical case presentations, each reflecting traumatic injury or other pathologic lesion. The cases are organized anatomically according to location, and many of the cases are devoted to wounds of the skin. Others include tumors or ulcers, and injuries to bones and joints.

Ancient Egyptian physicians were surprisingly sophisticated. For example, they recognized that the brain controlled bodily movement, with injury to one side of the brain leading to weakness of extremities of the opposite side. Physicians also realized the importance of examining the heart and pulse when determining the extent and nature of a disease and injury. What surprised me was a system where the physician determined which patients to treat and which were hopelessly ill and did not merit curative treatment.

Each case in the Smith Papyrus contains physical observations of the disease or injury followed by a diagnosis, and a prognosis which determined the level of treatment offered. James Henry Breasted, the first translator of the document, called this prognosis the “verdict.” There were three possible verdicts rendered by the Egyptian physician, the most favorable was a lesion or disease that can be treated and most likely cured. The next and more serious verdict determined that the injury or disease can be treated but may not be cured. Finally, there was the verdict of a hopeless prognosis, where curative treatment was not offered.

Medicine today is quickly evolving, and there are lessons to be learned from the ancient Egyptians. First, the physician has been dethroned from the godlike status they once held. The days in which sacred information was passed down into the hands of a select few are over, as medical knowledge is available to anyone with a handheld device. The scientific knowledge and values transmitted by mass media have formed a culture whereby sickness, aging and death are lifestyle choices rather than natural components of human existence. Many caregivers, though equipped with the knowledge to recognize medical futility, are either untrained or unwilling to have the difficult conversation with patients and families explaining that curative treatment will not work.

Part of the physician’s role in ancient Egypt was to recognize medical futility and act accordingly. How different this is in today’s society, where illness and death are often viewed as failures of the medical system. A recent report by the Institute of Medicine underscored the “perverse financial incentives” that deter implementation of humanistic end-of-life principles and encourage costly heroics that may incur additional suffering. Palliative care means facing the facts and offering alternatives that may not be in accordance with cultural preconceptions. Part of the solution recommended by the IOM is introducing palliative care early in the medical curriculum, impressing upon young doctors the importance of not only recognizing, but making appropriate decisions when cure is not the goal – much like the practice of physicians in ancient Egypt.

* * * * * * * * * * * * * * *

Reference for this post was: Levine JM. Wound care in the 21st century: Lessons from ancient Egypt. J Am Med Dir Assoc 2000; 1: 224-227.

To sign up for my upcoming free webinar sponsored by the National Pressure Ulcer Advisory Panel (NPUAP) entitled History of Wound Care: Past, Present, and Future, click here.

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Monday, October 19, 2015

Moral distress among residents: the hidden price of futility

Crash cart.  Courtesy Wikimedia.
by: Alex Smith, @AlexSmithMD

Have you ever had that experience when you think what you're doing is futile, and that thought goes through your mind:

"Why am I doing this?"

"I'm torturing him."

"This feels wrong."

For those of us that are physicians, think back to your internship and residency training.  I think we can all remember at least one of these situations, if not more.

I remember being in the ICU as a 3rd year internal medicine resident, being sent a man with advanced cancer on blood thinners from the emergency department who was losing liters of blood through his nose.  He was DNR, but his code status had been reversed in the ED by his family to treat this unexpected event.  This decision was not unreasonable, and yet the family looked terribly distressed by the blood spurting everywhere and frenzy of activity around him .  The patient was thin, bordering on emaciated.

Blood started oozing out of his nose again, and his blood pressure plummeted.  We squeezed hard on the packing in his nose.  He started to code and we brought out the pads to shock him.  The nurses and I looked at each other and we were thinking the same thing: "This doesn't feel right."

Liz Dzeng, a physician-researcher at UCSF, now brings a fresh perspective and insights into moral distress felt by resident trainees in providing futile care near the end of life.  Liz completed this research while a Gen Med Fellow at Hopkins and concurrently a PhD candidate in sociology at Cambridge, in England.

Liz interviewed 22 residents at 3 American internal medicine programs.  She found high degrees of moral distress among housestaff.  The quotes speak for themselves:
It felt horrible, like I was torturing him. He was telling us we were torturing him. I did not think we were doing the right things
A lot of traumatic things happen when you’re a resident. There was this tiny 90-year-old lady. We had to code her and it was one of the worst experiences of my life
You know there’s no good outcome. You just continue to code them and at some point they’re going to die. You’ve wasted time and resources and you’ve just provided futile care and tortured somebody for however much more time. Then there’s the whole disassociation where you want what’s best, but what you can do? And what do you have ability to affect? You just do your job
There are definitely patients that disturb the nursing staff because they are the ones who have to carry out the doctor’s orders and who are at bedside seeing the effects of our treatment—seeing patients suffer.
We do a lot of terrible things to critically ill patients and at the end of life. It’s routine care, and I feel pretty numb to having done those things 

Liz poignantly weaves these quotes together into themes that tell a story of outrage, powerlessness, and dehumanization.  The single ray of hope came from a hospital that routinely encouraged debriefing and discussions that normalized the emotional pain of treating someone when you feel it's torture, not care.

But this study is just scratching the surface .  The nursing literature is replete with research on moral distress.  The medical literature...not so much.  There is so much pain in this paper.  It brings me back to some very hard and emotional experiences in my training.

For our bleeding man with advanced cancer, I brought the family into the patient's ICU room during the code.  I called out for a dose of epinephrine to be administered, and his daughter said, "Will any of this help?"  I said it almost certainly would not, and they asked us to please stop.  We ended up with mixed emotions - sad that we had done so much that felt like "torture" to this man, yet pleased that the family ultimately agreed to stop.

Most times though, it doesn't stop so neatly.

Issues with the term and meaning of futility aside, let's face the reality here.  These are our future physicians who are morally scarred, who become numb, inured to the moral pain, and unable to empathize.

We have to ask ourselves, is this how you would want your doctor trained?  Is this hidden moral cost to young physicians worth the choice we give people to make such decisions? 

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Friday, October 16, 2015

The Evidence for Palliative Care Is Better Than Many Drugs Approved by FDA

by: Eric Widera (@ewidera)
“But one of the most sobering facts is that no current policy or practice designed to improve care for millions of dying Americans is backed by a fraction of the evidence that the Food and Drug Administration would require to approve even a relatively innocuous drug.”
Scott D. Halpern, M.D., Ph.D., NEJM

What? What??? Really? No current practice designed to improve care for dying Americans is backed by a fraction of the evidence to approve a drug? Are you kidding me? What about palliative care?

This is the second sentence of a NEJM article that was published today. While the intention of the article is actually good (more research is important in end of life care) the article completely misses the significant advances in palliative care over the last decade.

We do now have a growing evidence base for palliative care and now several randomized control trials on the impact that palliative care has on improving the care and outcomes of patients who are dealing with serious illness (1,2,3). I would argue that this level of evidence is not just a fraction of evidence, but is more compelling then data behind some drugs approved by the FDA (Namenda XR anyone?)

I’m still digesting this article and its key point that we should treat end-of-life care as we treat a drug approval process. While it makes a nice pithy statement, it misses points such as palliative care research is funded at a miniscule fraction that we fund research in other areas (Palliative care receives 0.01% of the National Institutes of Health budget).

Please read the article and let me know your thoughts. Anyone else disturbed by the message (I know I shouldn't write when emotional so I may just be missing something here).


  1. Temel JS, Greer JA, Muzikansky A, et al. Early palliative care for patients with metastatic non-small-cell lung cancer. The New England journal of medicine 2010;363:733-42. 
  2. Zimmermann C, Swami N, Krzyzanowska M, et al. Early palliative care for patients with advanced cancer: a cluster-randomised controlled trial. Lancet 2014;383:1721-30. 
  3. Bakitas M, Tosteson T, Lyons K, Dragnec K, Hegel M, Azuero A. Early Versus Delayed Initiation of Concurrent Palliative Oncology Care: Patient Outcomes in the ENABLE III Randomized Controlled Trial. J Clin Oncol 2015;33.
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Monday, October 5, 2015

California assisted suicide bill signed into law, what next?

By: Laura Petrillo, MD @lpetrillz

Governor Jerry Brown signed California bill ABx2-15 into law today. The law will give California doctors the ability to prescribe lethal medication to competent, terminally ill patients so that they may end their lives. California is not the first state to enact such a law (Oregon, Washington and Vermont have laws in place), but it is the first since Brittany Maynard, the 29 year-old California woman with a fatal brain tumor, moved to Oregon last year to use the Death with Dignity Act and re-invigorated the decades-old legalization movement. Other states are likely to follow.

What next? If there is one message that all healthcare providers should hear, it is this: a request for assisted suicide is an opportunity to learn more about the individual’s experience, and to partner with the patient to create a plan that addresses her needs. This should include an evaluation of decision-making capacity, mood, symptoms and psychosocial support, followed by a trial of intensified treatment of reversible causes of suffering, possibly including referral to mental health specialists for additional care, and almost always enlisting palliative care support. Timothy Quill’s Fast Facts #156 and #159 provide an excellent starting point for going through this process. After thorough evaluation and treatment, and learning about other options such as hospice care and withdrawal of life-prolonging therapies, if the patient persists in her request, assisted suicide should be considered as a last resort.

The reason to go through all of this is not to prolong life at all costs, but because the vast majority of people will actually achieve a better quality of life through supportive care, and will not persist in their request for hastened death once their needs are met. If the goal of assisted suicide is truly to relieve suffering, anything that could achieve that goal while someone is still alive should be pursued. In Oregon and Washington, the number of people who use assisted suicide is incredibly low, about 0.3% of all deaths, most likely because there is excellent access to hospice and palliative services in those states (as demonstrated in last week’s CAPC report card), as well as appropriate evaluation of eligible patients.

As palliative care and geriatrics providers, we need to lead the way in spreading the message that every assisted suicide request is an opportunity to help our patients achieve a dignified death, but not necessarily through assisted suicide— it should be a last resort. Whether you plan to prescribe or not, it is important to create your own plan for how to respond, and if you can, educate others about primary palliative care skills (“Tell me more about your suffering”; “What are you worried about?”) and how to find more support for people contemplating assisted suicide.

Photo courtesy of Nancy Lundeberg ©2014
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Friday, October 2, 2015

Report on palliative care in US hospitals: glass 2/3 full or 1/3 empty?

by: Alex Smith, @alexsmithMD

The Center to Advance Palliative Care and the National Palliative Care Research Center just released their 2015 report card. Boy is there some great stuff in there!

The major point: two thirds (67%) of US hospitals with >50 beds report a palliative care program.  So is the glass two-thirds full, or one third empty?

There's more to this question than the big picture two-thirds one-third, however. I suggest you go check out your state's "Grade" for inpatient palliative care.  California, my home state, got a "B" as 74% of hospitals with >50 beds report a palliative care program.  Not bad.  The Northeast and Mountain regions have  palliative care in almost all hospitals.  The south, not so access to inpatient palliative care may be 2/3 across the country, but in some places you'll be hard pressed to find any palliative care at all.  Good luck finding palliative care if you get seriously ill in Mississippi, where only 29% of hospitals have palliative care services.

Further, if one looks at the trajectory of growth of palliative care, it seems to be slowing.  In the 2005 report card the rate was 53%, in 2005, then 63% in 2011, now 67% in 2015.  The rate has gone from almost 2% a year of growth down to 1% per year.  (some of these differences may be due to a more robust methodology in the most recent 2015 report- they actually called all hospitals and asked if they have a palliative care program, rather than relying on publicly reported data).

For profit-hospitals still lag way behind nonprofit and public hospitals in access to inpatient palliative care.  Only 23% of for profit hospitals with >50 beds report a palliative care program. That's pathetic.  What's the story there?  I don't get it.  The evidence is mounting that palliative care is not only great at improving quality of life for people with serious illness and their families, it saves money.  See this recent study in the Journal of Clinical Oncology that piles more evidence on that mountain, showing that the earlier the consult in relation to admission, the greater the cost savings.  Shouldn't the for-profit hospitals be all over this???

I think overall we can feel pretty good about the state of progress for inpatient palliative care.  As the main study authors, Diane Meier and Sean Morrison note, the greatest need is no longer on the inpatient side.  It's in the outpatient arena, where people with serious illness spend the vast majority of time, yet access to palliative care services is rudimentary, limited to hospice, or nonexistent in most of the country.

One more thing - I love the coupling of the report with actionable policy recommendations for congress, the funders of research NIH/PCORI/CMMI/AHRQ.  My favorites:
  • Establish palliative care awards for palliative care in medicine, nursing, social work, and chaplaincy.
  • Set aside more Graduate Medical Education (GME) slots for palliative care training.
  • Establish a Center for Scientific Review (CSR) study section on serious illness.  CSR reviews grants for the NIH.
 So much to read - have a look!

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Thursday, October 1, 2015

Drugs and Bugs at the End of Life

by: Eric Widera @ewidera

The majority of hospitalized patients with advanced cancer are given antibiotics in the last week of life. Nearly half of those individuals living in nursing homes with advanced dementia are given antibiotics in the last two weeks of life.  And yes, even in hospice, one out of four individuals  are given antibiotics within the last weeks of life.  If one would just go by numbers, it would seem that antibiotics are a mainstay of palliative care.

So that begs the question, are these medications really benefiting the patient? In this weeks JAMA, Manisha Juthani-Mehta, Preeti Malani, and Susan Mitchell wrote about these issues in a piece titled Antimicrobials at the End of Life: An Opportunity to Improve Palliative Care and Infection Management."

It’s a short piece that makes a good quick read, and best of all, it is free! The risks of antibiotics are discussed including drug reactions, drug-drug interactions, and C. difficile infection, as well as the burden diagnostic testing (blood draws) and treatments (IV lines). The potential benefits are discussed, as well as potential next steps including the need to merge “best practices and research initiatives from both infectious diseases and palliative care,” which sounds like at the very least a wonderful topic for a future AAHPM or AGS symposium (hint hint Dr. Malani).

The one thing I’m still hemming and hawing over is the recommendation that “evidence-based and goal-directed counseling about infection management at the end of life must be a routine part of advance care planning and treatment discussions between clinicians and patients with advanced illness.” Antibiotics are just one of the many potential medical interventions that are often given near the end of life. Talking about all of these options may be overwhelming for patients and family members, and distract from the more important aspect of advance care planning which is figuring out goals and values.

With that said, I think this article serves as an important reminder for me.  Next time I utter the phrase "lets just finish off the course of antibiotics" when admitting a hospice patient, I will stop and think "does this patient actually need to be on it in the first place?"

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Wednesday, September 30, 2015

Hope and Uncertainty

Source: Wikimedia

by: Sei Lee

I wanted to alert folks to a wonderful "Piece of My Mind" article in JAMA (Mar 17, 2015) by a pediatrician about difficult conversations. As I was reading it, there were numerous phrases and sentences that poignantly rang true.

The manuscript revolves around the author and his wife’s experiences following a spontaneous abortion. Providers didn’t want to tell him the bad news, despite the fact that the ultrasound was strongly suggestive of bad news. Providers used strategies that sounded all too familiar to me.

"Uncertainty can be a 'get out of jail free' card for providers, momentarily allaying fears while punting the difficult conversation down the road."

"Hope is a powerful tool that physicians have wielded incautiously throughout the history of medicine."

As a palliative care provider, I’ve witnessed many clinicians use hope and uncertainty to avoid hard discussions. Instead of talking about what’s most likely (which is often bad news), they use phrases like, “Sometimes, there’s a delayed treatment effect”, not mentioning that most of the time, there isn’t. They say, “Let’s hope for the best”, without exploring what the most likely future holds for the patient and family. Providers that focus on an unlikely positive outcome while ignoring the much more likely negative outcome are obscuring the truth and potentially harming patients.

The author goes on to talk about the harm that can result in delaying these hard conversations, prolonging anxiety and suffering (the “pain of anticipation”) without changing the outcome. As a pediatrician, he was able to push the provider, who initially said, “we can’t be certain” into admitting, “…I would bet that you lost the pregnancy.” With this hard-won information, they were able to grieve (with ice cream), face the truth and move on to the next phase of their lives. This realistic assessment of the situation should be available to all patients, not just doctors who are able to push their colleagues into reluctantly admitting to it.

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Monday, September 28, 2015

A physicians group's baseless objections to advance care planning

AAPS objections to CMS payment for Advance Care Planning are a wreck.  Source: Wikimedia Commons

by: Stan Terman, PhD, MD

Beneficiaries of Medicare, and their families and surrogates, may soon have more opportunity to obtain an “explanation and discussion of advance directives such as standard forms” with physicians and other health care providers for one or more half-hour, face-to-face sessions. But first, CMS must review the approximately 240 comments that were submitted before September 8, 2015.

Several comments strongly objected to the proposal. Many objections seemed derived from the same boiler plate, but one by the Association of American Physicians and Surgeons (AAPS) is both strong and unique. This non-profit, 5000-member organization, which describes itself as “defending the patient-physician relationship and the practice of ethical medicine,” characterized payments to physicians as: “financial incentives,” “inducement,” “unethical conflict of interest,” similar to other “unethical bonuses,” and a “commission-like reward system.” It criticized the option for additional half-hour sessions as: “attempts to persuade patients or their families of something they would prefer not to do” which is “to forgo care near the end of their lives” and would subject Medicare beneficiaries to “unnecessary” and “repeated [and] extended badgering” that is “harassment.”

Payments of $87 to discuss a difficult, emotional issue for a half-hour are unlikely to be enough “inducement” for greedy physicians to practice unethically since primary care physicians generally earn over $300 per hour. Furthermore, AAPS’ objection is based on two incorrect premises. First, they asserted that the codes “would compensate a practitioner only if he obtains a completed form.” In fact, the proposed regulation refers to completing forms in this parenthetical phrase: “(with completion of such forms, when performed).” {Bold emphasis added.) Thus, payment is not contingent on completing forms, which makes sense since patients might not be ready to complete forms until their second or subsequent visit. This is consistent with the current emphasis on end-of-life planning as “having the conversation” being paramount, and this may suffice if it adequately informs treating physicians and proxies/agents.

AAPS’ second incorrect premise is that all end-of-life discussions must lead to forgoing life-prolonging care so that AAPS can then assert physicians “would be compensated for exploiting their position of trust to persuade patients to forgo care near the end of their lives”; payment is “an inducement for practitioners to talk patients out of medical care to which they are entitled”; and, “It is improper to pay a practitioner money to persuade a patient to waive his rights” that “could be used to his detriment later in order to deny care.” (This point of view could be considered a physician-individualized version of the “death panel” hypothesis.) AAPS concludes that CMS’ proposal provides “an unethical incentive” that will “drive a wedge between the patient and physician, creating distrust by the patient of his physician.”

Many organizations submitted comments in strong support of the CMS proposal, including Catholic Health Association and Trinity Health. Some comments provided excellent annotated summaries of evidence that Advance Care Planning benefits patient care and lowers the emotional toll of dying for caregivers and loved ones; for example, Rod Hochman (Providence Health & Services), and Catherine Dodd (San Francisco Health Service System).

Separate from this CMS-proposal-inspired debate were some brief comments of Ezekiel Emanuel (physician and medical ethicist, U. Penn.) and Thomas Smith (oncologist and director of palliative care, Johns Hopkins), who participated in a recent Freakonomics podcast:

Dr. Emanuel said, “Talking about the end-of-life is the hardest thing a doctor does. And it’s emotionally charged; it’s physically draining; it takes time. And we need to recognize that increasingly these kinds of conversations… they require a lot of skill, as much skill as maybe doing a colonoscopy or doing a surgical procedure. It’s not physical, manual skill, it’s not about dexterity, but it is about something probably just as important if not more important. It’s about emotional understanding of patients and it ought to be compensated the way we compensate for other skills and talents.”

Dr. Smith said, “None of that [CMS proposal] is trying to get people not to be coded [to opt for DNR], not to be in the hospital… but just to discern their wishes. We can’t honor people’s wishes unless we know what they are… about resuscitation, being on a ventilator, being on dialysis.”

While no patient is required to make an appointment to discuss Advance Care Planning and while those who do are not required to forgo life-sustaining treatments, physicians must discuss possible end-of-life conditions with their patients so they can learn about their patient’s life values and goals of treatment. Patients need information and then time to think about and discuss these issues. It’s hard to imagine this could be accomplished in fewer than two half-hour sessions. After patients decide what specific treatments they do, or do not want for particular end-of-life conditions, they can complete forms that include: Living Wills to memorialize their expressed personal wishes; Durable Powers of Attorney for Healthcare Decisions to legally designate their selected surrogate decision-makers; and POLST paradigm forms they must cosign after they are sure this set of actionable medical orders authentically reflects their treatment goals.

Some religious authorities do discourage Living Wills. Examples: Father Tadeusz Pacholczyk’s essay answered “No” to his article’s title, “Should a Catholic have a ‘Living Will?’” The Catholic Bishops of Wisconsin published a strong warning that explained why followers should not complete POLST forms. Yet the 1990 Federal Patient Self-Determination Act states, “Health care providers are not allowed to discriminately admit or treat patients based on whether or not they have an advance health care directive.”

In fact, completing Advance Care Planning forms can either forgo or request care. Nothing in the proposed CMS regulation requires patients to choose, or physicians to influence them to choose, forgoing potentially life-sustaining treatments. Instead, these sessions may result in completing forms that indicate the patient’s preference is to continue life-prolonging treatment indefinitely. Most forms are balanced, but many are unfortunately vague. Example: the Uniform Health-Care Decisions Act’s Advance Directive (which has modeled many states’ official forms) provides two check boxes. One is: “(b) Choice To Prolong Life” that continues, “ I want my life to be prolonged as long as possible within the limits of generally accepted health-care standards.” Similarly, all POLST paradigm forms have check boxes to select “Full Treatment.” If a practitioner did present an unbalanced form to patients, their family members, surrogates, or advisors, they could decide that the form did not match their values or treatment goals and refuse to sign. In addition to this right to veto a proposed form, the author is aware of two pro-active approaches that are discussed next.

As part of its “Will to Live Project,” the Robert Powell Center for Medical Ethics offers “a legally binding pro-life alternative to traditional Living Wills” for those who want to prolong their lives, regardless of its condition. The center’s website strongly advises patients to avoid vague language since it could let others misinterpret their wishes and result in withdrawing or withholding of life-sustaining treatments. Another instrument, the Natural Dying—Living Will, can be used as a “will-to-live” and it strives to be specific in describing conditions and interventions. While the Powell Center has not recommended this form, this is not surprising since most who complete it want to avoid the suffering and prolonged dying of terminal illnesses, especially advanced dementia.

The “Natural Dying—Living Will” is generated by making “one decision at a time” using a decision aid tool that describes and illustrates 48 common end-of-life and advanced dementia conditions. For each condition, patients can decide “Treat & Feed” for every condition—if they want to live as long as possible can. (Note: Usually, patients decide on “Natural Dying” for some conditions, based on their previously judging that the continuation of life-sustaining interventions would cause them more harm and burdens than benefits.) Patients can even make their decisions irrevocable.

Rather than using “Medicare payments to drive a wedge between the patient and physician…and failing to improve medical care in any way” (as AAPS claimed), the CMS proposal would provide patients opportunities to discuss with physicians or practitioners, their life values, including religious values and goals of treatment. Learn their patients’ wishes is a prerequisite to physicians’ honoring them. While AAPS warns, “Healthy patients years away from the end of their lives may change their minds before ever confronting an end-of-life scenario,” no problem results from making treatment decisions before patients enter their final declining stage of health. Patients may have accidents or unexpected medical events such as strokes at any age, and then their completed forms can provide guidance for treatment decisions. What is important to appreciate is that patients can always change their minds—as long as they still possess capacity.

People’s greatest end-of-life fear is to lose control over their destiny. Why is this fear realistic? Because if others are in control, these others can decide how long and how much a patient will be forced to suffer before he or she dies. Some people also fear financial pressures may lead to treatment decisions that will force them to die prematurely. Fortunately, it is possible to maintain control in both directions by diligently selecting and completing Advance Care Planning instruments. Some do-it-yourselfers download internet forms. Many people sign standard forms that their attorneys attach to estate planning documents. Yet clinicians are in the best position to know what end-of-life trenches are really like. It is significant that a prominent attorney organization, the National Academy of Elder Law Attorneys, implicitly endorsed this view by strongly supporting the CMS proposal and by citing the Institute of Medicine’s Dying in America report that noted physician “time constraints and distractions” were the core obstacles to effective clinician-patient communication needed for advance care planning. Why? Because this prestigious organization did not add, “attorney-client communication.”

Regarding planning for the last chapter of life for patients who are in reasonably good health, the best way is to discuss their options with their primary physician. For seriously ill patients who have life-threatening illnesses, the best way may be to discuss their options with their treating specialist physicians. Of course, all patients need to be informed about palliative care. These discussions can increase mutual trust if all agree the goal is to attain a peaceful and timely dying. In contrast, the comments of AAPS and others—who denounced all discussions about end-of-life options as agenda-driven acts of coercion by greedy physicians—are appalling. The new CMS codes can help foster discussions that can lead to empowering acts of planning that ultimately make it possible for the last chapter of a person’s life to be harmonious with his or lifelong narrative.

Stanley A. Terman, Ph.D., M.D., is a psychiatrist and bioethicist who leads Caring Advocates, a non-profit organization that offers the Natural Dying—Living Will to help complete effective Advance Care Planning for Advanced Dementia and other terminal illnesses. He thanks Karl E. Steinberg, M.D., C.M.D., for his comments and suggestions. 


See Federal Register, vol. 80, no. 135 (July 15, 2015), at 41773 (CMS-1631-P) re: CPT codes 99497 and 99498. (c) Advance Care Planning Services, p. 41773. Available: []. Accessed 15 Sept 2015

Federal Register Medicare Program; Revisions to Payment Policies Under the Physician Fee Schedule, Clinical Laboratory Fee Schedule, Access to Identifiable Data for the Center for Medicare and Medicaid Innovation Models & Other Revisions to Part B for CY 2015, i(26). Available: []. Accessed 15 Sept 2015.

Freakonomics Radio: Are You Ready for a Glorious Sunset? August 27, 2015. Audio available: []; Transcript available: []. Accessed 15 Sept 2015.

Father Tadeusz Pacholczyk: Should a Catholic have a "Living Will"? 2007. Available: [ ]. Accessed 15 Sept 2015.

Catholic Bishops of Wisconsin, Upholding the Dignity of Human Life: A Pastoral Statement on Physician Orders for Life-Sustaining Treatment (POLST) from the Catholic Bishops of Wisconsin (2012). Available: []. Accessed 15 Sept 2015.

Patient Self-Determination Act, Omnibus Budget Reconciliation Act of 1990, Public Law No. 101-508 §§ 4206, 4751, codified at 42 U.S.C. §§ 1395cc.(a)(1)(Q), 1395cc.(f), 1395mm(c)(8) and 42 U.S.C. §§ 1396a(a)(57), 1396a(a)(58), 1396a(w) (1991)

UNIFORM HEALTH-CARE DECISIONS ACT 1993 “(6) END-OF-LIFE DECISIONS: (b) Choice To Prolong Life: I want my life to be prolonged as long as possible within the limits of generally accepted health-care standards.” Available: []. Access 15 Sept 2015.

Robert Powell Center for Medical Ethics: Will to Live Project. Available: []. Accessed 15 Sept 2015.

The Caring Advocates Natural Dying—Living Will. Available: []. Accessed 15 Sept 2015.

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Sunday, September 27, 2015

Ambulating Manhattan

Across the globe, more than half the world’s population lives in cities, and there is a growing recognition that urban environments need to be more age-friendly.   With its rich cultural offerings and easy access to stores, New York City looks like a great place to grow old.  In this post I present photos of elders getting around the city.   

Go downtown in the early morning hours and you can see Chinese elders strolling and exercising in the parks and public spaces.  This is the Manhattan Bridge that spans the East River. 

Most of these shots were taken with my iPhone going back and forth to the hospital.  The Bloomberg administration installed bike lanes all over the City, and these are favorite places for people speeding around on motorized wheelchairs, often in the wrong direction.  

This is a well dressed trio.  The lady in the middle was photographed going to church on 125th Street in Harlem, while the lady on the right was waiting for her ride.  

Uptown, midtown, and downtown you can see the universality of older folks taking care of their daily chores, going visiting or out to eat, or just strolling in the fresh air.  Our aging society is in full view on the streets of Manhattan.

This lady might have had all her worldly possessions in tow.

This lady in the Flatiron District gets double use from her dog caddy, getting the pooches around and assisting her ambulation. 

Stylishly dressed in matching hat and sneakers, this elder was going cross-town on 21st Street at a frightening speed.

The subway is a common place to see elders, some struggling to get up and down the steps.  Many of the stops, but not all, have elevators.

I watched with amazement as this lady made her way uptown on First Avenue in the middle of the bike lane, almost getting creamed by bicycles every other minute.

According to the website AGE-FRIENDLYNYC there are over 1 million people 65 and over living in New York City.  By 2040 this number is expected to increase by over 40%.  We as geriatricians are acutely aware of the shortcomings of our infrastructure with regard to our frail population, and the need to advocate for independence of our patients, informed choices on healthcare decisions, and a more age-friendly environment.

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Friday, September 11, 2015

The Death Menu

by: Amy Getter, RN, MS

Death scenarios, debates about assisted suicide, hospice and end of life commentaries, “Death cafes” and “death dinners” have been in magazines, the subject of special reports on television, newspaper articles and in various other media sources. It seems that a new popularity has risen among the press to highlight the “taboo” subject of death. Naturally, as a hospice nurse, I am pleased to see an increasing interest from the public in things surrounding dying (since, after all, it is what I talk about every day!). More recently, palliative care has joined hospice and dying in the media’s scrutiny and discussion.

Palliative care is now a recognized medical specialty. Over half of the nation’s hospitals offer a palliative care team: a group of experts that usually consists of physicians, social workers, chaplains and nurses. One of their goals is to help a patient and their family members navigate through the maze of hospitalizations and different treatment possibilities while also alleviating disease symptoms for a person with a serious, life threatening illness. A good friend who works on a palliative care team in a large Seattle hospital shared with me that she uses the term “menu” when speaking to someone regarding the choices surrounding a person with a life-limiting illness.

That started me thinking about what I affectionately term the “Death Menu” with all the varied courses. People are offered options, like palliative care, that is included as one of the many “choices on the menu”. My friend relayed a story to me recently about a woman that the oncologist had referred to the palliative care team.

Paula was in her early forties, in the end stages of metastatic cancer. She was experiencing extreme pain that necessitated hospitalization. Although expert consultation and multiple interventions were successfully enjoined, Paula felt desperate about her life. She wasn’t dying today, but like all of us, she was dying someday and perhaps had a better realization than the rest of us that her life was truly limited. She was considering how she wanted to spend the remaining weeks if that was all she had. Various menu items were presented to her including another aggressive palliative chemotherapy; a clinical trial that might extend her life (many of the available treatments had already been tried and had failed); or perhaps going home with hospice. That was when Paula asked why wasn’t she offered the opportunity she had often provided to the animals she tended to over the years, when advanced disease was causing undo suffering? She had given them something to “help them over their last hurdle”.

My friend shared with Paula that a person had a similar option, since 1) She had a terminal diagnosis, with a life expectancy of less than 6 months due to her disease progression and 2) She was capable of making this decision for herself. She could choose to end her life “prematurely”, by taking a lethal number of pills prescribed by her doctor, if that was her choice. Paula had never heard of the term DWD (death with dignity) or PAD (physician assisted death). Nor had she ever heard of the nonprofit agency that assisted people with jumping through the hoops to complete the many details in order to attain the prescription (Compassion and Choices). This option was available in the state in which Paula resided, and she was qualified, having a “terminal” illness, to pursue obtaining the medications if she chose to. (No, PAD is not available to just anyone. No, it is not something that is done to a person. No, it is not a quick process nor an easy solution. It is a menu selection made by a person who has a choice in what their final days might look like).

I don’t know the rest of the story, except that Paula did go home, and she did choose to have hospice care. She may have also chosen PAD. If in fact she did, her death certificate would read the cause of death was metastatic cervical cancer. It would be decided by Paula, how her life ended, and her prerogative, whether death occurred naturally or she helped herself “over that last hurdle”. After all, it was Paula’s death.

I have witnessed many people face their mortality with dignity and grace. Some have had every available including “futile” treatment literally up to the last day of their life; some pursued palliative treatment rather than aggressive surgeries; some opted for no treatment; some have chosen hospice and others have not; some died in their homes; others died in the hospital; some chose PAD; most have not; some have attempted to make the choice for PAD but obstacles have been placed in their way.

I don’t pretend to have the ethical answers, I am happy to admit that I don’t know THE right choice for another person to make. I am just very glad that there are a number of menu items to choose from, and that each of us will have to decide for ourselves what our entrĂ©e will be. Like all menus, though, I would hope that the choices are listed accurately, honestly without prejudice or partisanship. Soon enough, the death menu will be our own, for perusal and selection, and my hope is that everyone has the opportunity to “Have it your way”.
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Thursday, September 10, 2015

Redesigning Dying

Dying is in serious need of a redesign. This is the point of BJ Miller's TED talk that was given several months ago and is now available to watch at the TED talk website. If you haven’t seen it yet, I highlight encourage you to watch it.

BJ, the Executive Director of the Zen Hospice Project and a true leader in palliative care, gives an inspirational talk about the certainty of death, the current approach our health care system takes to care for the dying, and various “design cues” we can take including our need to lift our sights to making life more wonderful rather than less horrible as death approaches.

This talk is a great reminder that as a community we can use our natural creativity to rethink dying.  Not to go against it, but as BJ says in his talk:
"We can design towards it. Parts of me died early on, and that's something we can all say one way or another. I got to redesign my life around this fact, and I tell you it has been a liberation to realize you can always find a shock of beauty or meaning in what life you have left, like that snowball lasting for a perfect moment, all the while melting away. If we love such moments ferociously, then maybe we can learn to live well -- not in spite of death, but because of it. Let death be what takes us, not lack of imagination."

by: Eric Widera (@ewidera)
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Tuesday, September 8, 2015

Recent Covers on The Gerontologist

The most recent issues of The Gerontologist (June and August 2015) feature photos I took in 2012 on a trip to Kyrgyzstan in Central Asia. These strong  and beautiful people are descendants of Ghengis Khan and traders on the Silk Road.  I was amazed to learn the extent that elders are revered in traditional Kyrgyz society, but the collapse of the Soviet Union and globalization caused rapid economic and cultural change that have not been to the benefit of the older generation.

The Soviet regime brought Kyrgyzstan jobs and education but disrupted traditional life in many ways. Mandatory work for women ceased transmission of handicraft skills. Forced abandonment of nomadic lifestyles put skilled builders of yurt components out of business. The end of Soviet domination closed most factories, and privatization of land and businesses did not stem the economic downslide that resulted in massive unemployment. A large segment of the young male population left for Russia in search of jobs, leaving the elders to tend farms and raise grandchildren.

In past generations elders were the source for problem solving when it came to issues of morality, upbringing, domestic disputes, and arguments between neighbors. Traditional village life taught that a person's identity depended upon information transmitted by their society. Socialism dictated similar principles, and sharing was valued over individuality. Secular education and globalization have displaced elders from the role of transmitting cultural values. Instead the media has assumed the role of teaching society's rules, and identities are built more on differences rather than similarities - much like western society. The end result is a generation of elders who are no longer valued or integrated into daily life. 

It still is believed that blessings from an elder can influence a person's life. I experienced this in the Jety Orguz mountains when talking to a bearded shepherd in his 90's named Kodyr. He was wearing a tall white felt hat and a long, finely embroidered coat called a chepken, and looked like a character created by J.R.R. Tolkien. At a certain point in our discussion he paused and looked at me intently and said, "I am going to give you a blessing." After the blessing I felt a sense of humility, and all I could do was shake his hand, smile, and thank him.

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Monday, September 7, 2015

Technology Will Transform Care for Older People: Truth or Hype? (Hint: HYPE)

I seem to keep hearing stories about how fancy new technologies will transform care for older persons.  Living in the Bay Area, it is kind of uncool to not claim excitement about the possibilities.

So, I guess I will avoid admitting that I am just not getting jazzed up about the possibilities.  I suppose one day something transformative will come along.  But, what older people really need, especially those facing the disabilities and frailties of old age, is more high touch.  Not high tech.

Here are a few ideas I have heard pitched over the past year that create a big yawn:

1) Monitoring Grandma and Grandpa:

I suppose many of you have heard this idea.  You are worried about your older parent/grandparent, so you put sensors in their home.  With home monitors, you can now get a text on your iPhone so you know what time Grandma has woken up, when she has eaten, whether she has taken her medicine, when she leaves the house, and when she comes back.  If anything is amiss, you can take action.

Sounds good until you actually think about it.  Problem is that most older people I know would absolutely hate this.  Guess what:  Most seniors don't want to be treated like children by their children.

Come to think of it, we have experience with this idea in a non-Geriatric setting.  Doesn't this kind of sound like the electronic monitoring bracelets used for prisoners on house arrest?

2) The urine pH monitor:

Gotta love this one.   Incontinent patients in nursing homes get lots of urinary tract infections (UTIs).  So, how about putting a pH monitor in their undergarments? Now we will know when their urine pH falls so we can start them on antibiotics earlier.

Small problem:  Nursing home patients often have bacteria in their urine.  But treating asymptomatic patients does no good, but can do lots of harm.  Nursing home patients with bacteria in their urine should only be treated if they have symptoms suggesting a UTI.  This type of device will lead to massive over treatment and antibiotic related complications.  This technology wonder will do nothing to help the problem of nursing home UTIs.  Only members of the Clostridium Difficile Fan Club should like this idea.

3) VA Health Buddy:

This is an example of how a good idea can go bad.  The VA Health System has pushed a device (often called the Health Buddy) that allows patients to monitor all sorts of things, such as blood pressure, more frequently.  This is good for some patients.  But the problem is that the VA made use of the Health Buddy a performance measures, leading to indiscriminate use of these devices.  Many Geriatricians in the VA have grown to really dislike the Health "Buddy."   Patients get the device, and we start monitoring all sorts of things in a frail patient that do not need to be monitored.

In Geriatrics, our goal is to make patients' health problems as little a part of their life as possible.  This means we seek to  manage their health problems with as little disruption to their lives as possible.  But devices like the Health Buddy and other technologies make patients' health problems as much a part of their lives as possible.  Just the wrong direction.

There seems to be a flawed assumption that underlies many of these tech interventions:  That more data on our patients is always good.  But that is a very very wrong assumption.  Not every data point on a patient requires action.  By "finding things early" we often find things that would have caused no distress or harm to patients if left untreated.  But, when we find asymptomatic "abnormalities" we may introduce harmful interventions that convert a non problem into a problem.  And of course the mere collection of data can be intrusive.  It may be easy to design devices to collect more data.  The challenge is to intelligently think about what data need to be collected, and when it makes sense to do something about the data.

My advice to entrepreneurs and venture capitalists:  Think high touch before high tech.  What kinds of innovations will actually improve the quality of life of older people and make them feel better and promote social engagement?  Think about this question before even thinking about technology.  Then and only then, think about how your technology can promote high touch.  Technology that promotes high touch is where the real innovation may lie-and your chance to prove us skeptics wrong.

by: Ken Covinsky @GeriDoc
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Friday, September 4, 2015

?s about Medicare payment for advance care planning

The Supreme Court case of Cruzan (Nancy Cruzan pictured) vs. Missouri established the right of individuals to make decisions in advance about treatment in future states of incapacity.

by: Alex Smith, @alexsmithMD

Will it finally happen?  After death panels and all that nonsense, will we finally reimburse physicians for the sensible conversations they have with patients to plan for future care - advance care planning?


I heard that it was easy to comment on the proposed CMS rule, but sadly found that this was not so.  The first link I used did not take me to the correct page.  The second link, from AAHPM, took me to the correct page.  The link to comment is right near the top.  Unfortunately, if you want to find the actual language of the proposed change, you have to scroll down through hundreds of pages of unrelated rule changes.  I gave up and used the search function to find it using the word "Advance".

I'm pasting the full wording of the rule change below.  Here is my interpretation of the rule change, and a number of questions the actual text raise for me.
  • 2 codes for advance care planning will become eligible for re-imbursement
  • 99497 is for the first 30 minutes
  • 99498 is for each additional 30 minutes
  • Physicians and "other qualified health professionals" can bill - who does this include?  NPs? PAs? social workers?
  • Coverage is for planning that may or may not include completion of advance directives - this is good as many times the conversation is more important than the form, and some people are reluctant to put preferences down in writing
  • Medicare has not made national coverage determinations, and is allowing local contractors to make coverage determinations.  What does this mean?  Will they cover it or not?  Perhaps this means that local Medicare entities will decide what documentation is necessary to justify payment?
  • Medicare is proposing to come up with a RUC-based standard of payment - I'm not clear how this relates to the previous statement about not making national coverage determinations.
  • They note they are open to suggestions for other circumstances where advance care planning is appropriate, such as at the annual wellness examination.  However, I'm not clear why these codes could not be used at the annual wellness examination as proposed - are physicians not allowed to bill for both during the same visit?
I'm not the only one with questions - see a list of questions and concerns from Joanne Lynn and folks at Medicaring here, including dollar amounts (99497 - $87, 99498 - $75).  Major concern they express is lack of payment for non face-to-face conversations, such as phone calls with surrogates.

I want to think these through before submitting my comment.  I'm also interested in other people's thoughts on key points to make in the comments.  Do we ra-ra support?  Suggest changes at this time?  Hold back on changes for now for fear of delay? Note comments are due September 8.

Finally, a HUGE thanks to the many professional organizations that have helped move this forward, spearheaded by the American Geriatrics Society.  See this Pallimed post by Phil Rogers for a bit of history, and this prior GeriPal post by Paul Tatum announcing the rule change and outlining some evidence in support of advance care planning you might want to include in your comment.

Full text of the proposal

c. Advance Care Planning Services

For CY 2015, the CPT Editorial Panel created two new codes describing advance care planning (ACP) services: CPT code 99497 (Advance care planning including the explanation and discussion of advance directives such as standard forms (with completion of such forms, when performed), by the physician or other qualified health professional; first 30 minutes, face-to-face with the patient, family member(s) and/or surrogate); and an add-on CPT code 99498 (Advance care planning including the explanation and discussion of advance directives such as standard forms (with completion of such forms, when performed), by the physician or other qualified health professional; each additional 30 minutes (List separately in addition to code for primary procedure)). In the CY 2015 PFS final rule with comment period (79 FR 67670-71), we assigned a PFS interim final status indicator of “I” (Not valid for Medicare purposes. Medicare uses another code for the reporting and payment of these services) to CPT codes 99497 and 99498 for CY 2015. We said that we would consider whether to pay for CPT codes 99497 and 99498 after we had the opportunity to go through notice and comment rulemaking.

We received many public comments to the final rule recommending that we recognize these two CPT codes and make separate payment for ACP services, in view of the time required to furnish the services and their importance for the quality of care and treatment of the patient. For CY 2016, we are proposing to assign CPT codes 99497 and 99498 PFS status indicator “A,” which is defined as: “Active code. These codes are separately payable under the PFS. There will be RVUs for codes with this status.” The presence of an “A” indicator does not mean that Medicare has made a national coverage determination regarding the service. Contractors remain responsible for local coverage decisions in the absence of a national Medicare policy. We are proposing to adopt the RUC-recommended values (work RVUs, time, and direct PE inputs) for CPT codes 99497 and 99498 beginning in CY 2016 and will consider all public comments that we receive on this proposal.

Physicians' services are covered and paid by Medicare in accordance with section 1862(a)(1)(A) of the Act. Therefore, CPT code 99497 (and CPT code 99498 when applicable) should be reported when the described service is reasonable and necessary for the diagnosis or treatment of illness or injury.

For example, this could occur in conjunction with the management or treatment of a patient's current condition, such as a 68 year old male with heart failure and diabetes on multiple medications seen by his physician for the evaluation and management of these two diseases, including adjusting medications as appropriate. In addition to discussing the patient's short-term treatment options, the patient expresses interest in discussing long-term treatment options and planning, such as the possibility of a heart transplant if his congestive heart failure worsens and advance care planning including the patient's desire for care and treatment if he suffers a health event that adversely affects his decision-making capacity. In this case the physician would report a standard E/M code for the E/M service and one or both of the ACP codes depending upon the duration of the ACP service. However, the ACP service as described in this example would not necessarily have to occur on the same day as the E/M service.

We seek comment on this proposal, including whether payment is needed and what type of incentives this proposal creates. In addition, we seek comment on whether payment for advance care planning is appropriate in other circumstances such as an optional element, at the beneficiary's discretion, of the annual wellness visit (AWV) under section 1861(hhh)(2)(G) of the Act.

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Monday, August 31, 2015

The experience of dementia OUTSIDE the nursing home: pain, weight loss, and transitions in care

by: Alex Smith, @AlexSmithMD

About 4.5 million people have dementia in the US.  Thanks to the fantastic work of palliative care researchers like Joan Teno, Susan Mitchell, Jane Givons, and Laura Hanson we know a tremendous amount about the experience of dementia for people residing in nursing homes. 

Although the nursing home is sometimes the final place of residence for persons with advanced dementia, many people reside in the community with dementia for years, including the end of life.  In fact, about 25% people with dementia live in nursing homes.  The remaining 75% live in the community, either in private residences or residential care facilities.  Unfortunately, compared to the experience of dementia in nursing homes, we know very little about the experience of dementia among community dwelling older adults.

It's a relief, therefore, to see this issue covered in the most recent issue of JAGS.
  • In a study of about 800 community dwelling older adults enrolled in the National Health and Aging Trends study, Lauren Hunt found that about 6/10 people with dementia report bothersome pain and 4/10 pain severe enough to limit daily activities.  People with dementia and multimorbidity were at greater risk.  1/3 of those with bothersome pain were not taking pain medications for pain.
  • In a study that matched 1,188 veterans with dementia prescribed a cholinesterase-inhibitor at an outpatient pharmacy with 2,189 veterans with dementia prescribed another chronic disease medication, Meera Sheffrin found the risk of 10 lb weight loss was 6% higher at one year for veterans prescribed cholinesterase inhibitors.  The number needed to harm was 21. 
  • In a study of 3,447 people with dementia enrolled in the Health and Retirement Study, Chris Callahan found that transitions in site of care were common.  People with dementia experienced 0.8 hospitalizations per year and 0.3 nursing home stays per year.  The most common route to the nursing home for people living at home ran through the hospital (ie home to hospital to nursing home).Of the 68% of the sample that died during the 10 years study period, about 60% died at home. 
What can we take away from these data?
  • Pain is common in community dwelling people with dementia.  Nearly 2/3 people with dementia have bothersome pain.
  • Many people with dementia living in the community are able to report current levels of pain.  Pain is likely undertreated. 
  • Although we often disclose the minimal to no meaningful benefits of cholinesterase inhibitors, our discussion is often met with, "Yeah, yeah, but doc, we have to try something, and our insurance will pay for it. What's the harm?"  Well, add to the list of potential harms a 10lb weight loss for one out of 20 people.  That's a serious amount of weight loss for a frail, older adult with dementia.
  • People with dementia transition back and forth between home, hospital, and nursing homes like Ping-Pong balls. 
  • If we want to intervene to delay nursing home placement for community dwelling people with dementia, the most important site to intervent may not be the home or the nursing home.  It may be the hospital, which severs as a conduit to nursing homes for people with dementia living at home. 
  • The nursing home is not the most common place of death for community dwelling people with dementia.  It's the home.
Our nation lacks a coordinated system of formal and informal care to provide for the daily symptom and functional needs of community dwelling people with dementia.  This lack of coordination is potentially disastrous given the aging of the population and lack of prospects for a dementia cure in our lifetimes.
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Wednesday, August 26, 2015

Is work life balance a first-world privledge problem, or not?

by: Alex Smith, @AlexSmithMD

In geriatrics, and to a much greater extent palliative care, work/life balance is recognized as critical to finding meaning in your work, to being at your peak at work and at home, and to avoiding burnout.

So last week I read with fascination a Washington Post story about pilot program at Stanford that supported physicians work/life balance.  Here's the brief story in bullets:
  • The powers at Stanford realized that many women were dropping out of academic medicine, despite generous leave policies, benefits for part time work, etc. They wondered why. 
  • They hired a firm to investigate.  The firm concluded that the at Stanford culture dictated "all-out devotion to work, all the time."  No one was using the generous family-friendly policies.
  • People were doing all sorts of unfunded work that ate huge chunks of time: mentoring, committee work, extra shifts, etc.
  • Stanford started a pilot program where physicians and basic scientists could use credits from the unfunded work to pay for services such as delivered meals, housecleaning, and assistance with grant writing.
  • The program, per the report, was enormously successful at improving job satisfaction.
My first reaction to this was elation.  Just offering generous policies and flexible scheduling is not enough.  You have to come close to forcing people to attend to their home life.  You have to align your policies to support those who want to work really hard, choose not take the leave, yet still desire a rewarding home life. 

So my bubble of elation was somewhat burst upon reading this reaction by Karen Sibert, an anesthesiologist at UCLA and mother.  You should go read the whole post here, which I will quote briefly:
  • "“work-life balance” is the very definition of a first-world problem, unique to a very privileged class of highly educated people, most of whom are white."
  • "Every day, I go to work and see the example of the nurses and technicians who work right alongside me in tough thoracic surgery cases. Zanetta, for instance, is the single mother of five children. She leaves her 12-hour shift at 7 p.m. and then faces a 60-mile commute to get home. She never complains, and unfailingly takes the extra moment to get a warm blanket for a patient or cheerfully help out a colleague.When I leave work, I see the gardeners who arrive in battered pickup trucks and mow lawns in the Los Angeles summer heat for slim pay and no benefits. I can’t imagine these people wasting time worrying about work-life balance. They’re too busy working."
  • On the Stanford program: "The sheer paternalism of the Stanford program is breathtaking. The assumption, apparently, is that Stanford faculty can’t be trusted to manage their own lives inside and outside of work."

Dr. Sibert makes some valid points here.  And yet something seems a little off-base about her argument.
  • We should not set our standards for what physicians can be concerned about based on how we treat worst-off groups.  Those who are in less privileged positions should be equally invested and outspoken about work-life balance.  They have at least equal claim to concerns about work-life balance.
  • In fact, I suspect many people who are not in positions of privilege and work long hours, similar to physicians, do worry about it.  They just don't complain about work-life balance to physicians. 
  • I hired a guy in a slim battered pickup truck, such as the one Dr. Sibert describes, to work on my garden.  Because I work all week, I arranged to meet him on a Saturday.  My first preference would have been Sunday, but he was clear: "I work all week, Saturday's too.  Sunday is for my family."  Work life balance.
  • Do nurses really not have any dialogue about work/life balance?   The ones I know well talk about it.  A lot.
  • Some of the physicians I know who are most concerned about work-life balance are not white. 
I suspect that work life balance is a universal concern, not unique to physicians.  Certainly, there is a spectrum that runs from legitimate concern to whining.  Whining sounds particularly grating when it comes from the privileged class.

We could claim exception because we're in geriatrics and palliative care, and are thus at risk for higher rates of burnout due to the exhausting emotional intensity of our work.  But let's set that aside for a moment.  That's the easy road. 

For physicians as-a-whole, where do you think concerns about work-life balance fall on the spectrum of legitimacy/whining? 
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Saturday, August 22, 2015

Why you got to be so rude: the impact of rudeness on the performance of medical teams

A fascinating study came out in Pediatrics recently on the impact rudeness plays on the performance of teams that I just couldn't help but write about (partially because I cant get that song out of my head from the video at the bottom of this post).

Enough about you Eric, tell me about the study

Ok. Let’s break it down real quick. The authors took 72 Israeli NICU professionals organized into 24 teams and put them in a training simulation involving a preterm infant whose is getting sicker due to necrotizing enterocolitis. These teams were evaluated in their performance in the simulation by 3 independent judges who used structured questionnaires to assess diagnostic performance, procedural performance, information-sharing, and help-seeking.

Now here is the rub. Before the start of the simulation a "visiting" head of an American ICU joined via webcame to observe and comment (While the article didn't include picutres, I’m thinking this person had a mustache, maybe like Ron Burgundy). The teams were then randomized to either have this expert express either mildly rude statements completely unrelated to the teams’ performance or just some neutral comments. The mildly rude statetments from the US expert included:
  • Prior to the start of the simulation, the expert told participants that he had already observed a number of groups from other hospitals in Israel, and compared with the participants observed elsewhere, he was “not impressed with the quality of medicine in Israel.”
  • During a break 10 minutes into the simulation, the US expert was asked if he had any comments to which he replied that while he liked some of what he observed during his visit, medical staff like those observed in Israel “wouldn’t last a week” in his department.  He also said that he hoped participants could improve and learn more from the workshop, he also hoped that he would not get sick while in Israel.

What did they find?

Teams exposed to the mildly rude comments than to the neutral comments from the “foreign expert” had significantly worse diagnostic scores (2.6 vs 3.2 [P = .005]) and procedural performance scores  (2.8 vs 3.3 [P = .008]).  Furthermore, rudeness negatively influenced team information sharing and help-seaking.

But is this really a study of rudeness?

For me the biggest limitation of this trial is whether it was truly rudeness that had the negative impact, or whether it was other aspects in the expert’s statements that had the impact.

Lets start with whether the comments were truly rude. Whether an action is rude depends on whether an action complies with the social norms or etiquette of a group or culture.  So what is rude to in a medicine culture may not be rude in a surgical culture.  The study apparently assessed perceived rudeness.  What they found was the rude expert as compared to the control expert was more rude on a 4 point rudeness perception scale. So, I think it it is safe to assume that he was rude.

The statements though were also judgmental. It may be the passing judgment on others (as well as disparaging others) may adversely affect a teams performance, especially in situations where they are being evaluated like a simulation.

Take home point

Given these limitations, it doesn't really matter in the end when it comes to the take home: don't be so rude or judgemental or disparaging, it may impact your teams performance.

by: Eric Widera (@ewidera)

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Friday, August 21, 2015

Lawmakers rush to reintroduce End of Life Options Act, but haste makes bad policy

By: Laura Petrillo, MD (@lpetrillz)

The End of Life Options Act, which would legalize physician-assisted suicide, was stalled in the California legislature earlier this summer and seemingly shelved until next year. But in a surprise move, lawmakers introduced a new bill with the same purpose on Tuesday, during a special session on healthcare financing called by Governor Brown. The new bill would bypass the Assembly committee where SB128, the former bill, was stalled for lack of support.

The issue that lawmakers are trying to rush through the legislative process is not a trivial one— the bill would give physicians the power to prescribe medication with lethal intent to terminally ill patients, a fundamental shift in the role of medicine to date. This is an issue that deserves deep contemplation, expert and community input, and thorough vetting to ensure the safety of everyone who might be affected. Instead, the lawmakers found a way to charge ahead in a special session and bypass the members of the Assembly who had hesitation about the bill.

Geripal community, whatever your philosophical views on assisted suicide, take a moment to think about how the most vulnerable members of our society might be at risk if assisted suicide were legal in your state, and if you have concerns, speak up now. Many states have bills that have been introduced in the past year to ride the Brittany Maynard momentum, though none has successfully become a law, yet.

Here are the groups of people at greatest risk, should assisted suicide become legal under laws modeled after the Oregon Death with Dignity Act:

Older adults. Under the California SB128, the burden of ensuring that patients are acting autonomously, have capacity to make decisions, and are free from coercion, falls to the physician who receives the patient’s initial written and oral requests. At the moment, the bill states that requests must come from individuals, not their surrogate decision makers or advance directives, though there is a troubling clause that individuals can communicate “through a person familiar with the individual’s manner of communicating,” which could mean anything. There is no discussion of what to do in the case of cognitive impairment or dementia, which may present subtly in conversation or on exam, and there are no requirements for assessment of the patient’s mental status or oversight at any point after the medication is prescribed, leaving patients open to coercion from family or caregivers as their disease progresses. For a fascinating story that illustrates how dementia muddies the timing of a fully autonomous exit, check out Sandy Bem’s story.

Lonely adults. In the Netherlands, where assisted suicide and euthanasia have been socially acceptable for longer than in the U.S., the condition of terminal illness, defined in SB128 as a doctor’s estimate of prognosis six months or less, is not the only reason that people can choose to end their lives. In a study that came out last week from a Netherlands euthanasia clinic, 6.8% of patients whose requests for euthanasia were granted had the only “medical” condition of being “tired of living,” and the type of suffering named by 49% of recipients was loneliness. The slippery slope argument is often dismissed, but prominent ethicists Barron Lerner and Arthur Caplan warned that “the European data are particularly relevant for the United States.” Indeed, in Oregon, an amendment was proposed to the Death with Dignity law earlier this year to extend the prognosis criteria from 6 to 12 months, underscoring the permeability of the hard line for what constitutes a terminal illness.

Disadvantaged socioeconomic groups. Despite the increased access to healthcare from the Affordable Care Act, patients and their families are still financially burdened by their medical care, and the proportional effect of this is greatest on the poorest members of society. Data from Oregon and Washington indicate that 40% of people who use assisted suicide express concern about being a burden on family, and 3% of people cite the financial implications of treatment as a reason for seeking assisted suicide. The response to this stress should not be to hand over lethal medication, but to redouble our efforts to increase access to good quality care for dying patients (and for everyone, all throughout life). The fact that the new assisted suicide bill was introduced in a healthcare financing session brings to mind the terrible implication that assisted suicide could save money for the entire healthcare system, though that was unlikely the intent of the lawmakers.

Patients with psychiatric illness. As with decision-making capacity, the burden of evaluating patients for mental illness falls to the original provider who receives the request, and the language in the bill is casual: “If there are indications of a mental disorder, the consulting physician shall refer the individual for a mental health specialist assessment.” Unfortunately, in Oregon, despite the finding of a 2008 study by Ganzini et al in BMJ that 26% of Oregonians who requested assisted suicide met criteria for depression, only 3 out of 105 people who died by assisted suicide in Oregon in 2014 were referred for a psychiatric evaluation. Besides the depressed individuals, the legalization of assisted suicide puts the greater community of people suffering from mental illness at risk, by condoning the idea that suicide is acceptable when people have decided life is not worth living for them. Suicide contagion is a real phenomenon, and there has been a concerning rise in the rate of all suicides in Oregon since legalization of assisted suicide. For a dramatic view of how legalization of assisted suicide can change a society’s attitude toward protection of people with mental illness, I recommend this story about euthanasia in Belgium.

Proponents of “Death with Dignity” and SB128 believe that assisted suicide is for a select group of people who want to make an independent, personal choice to control the circumstances of their death, which would otherwise be a gruesome process with inevitable suffering. For a public already anxious about death, and unfamiliar with its final stages, this can be compelling. But this is an unrealistic portrayal of death— the vast majority of patients can actually achieve the level of control and relief from suffering that they hope for through existing hospice and palliative care services. Proponents still insist that even with adequate access to palliative and hospice care (which not every patient yet has), there is a role for assisted suicide for some patients. That may be— but we owe it to our patients to think about at what cost. Evidence from Europe and even Oregon demonstrate that introducing the option of assisted suicide opens a pandora’s box of far-reaching consequences, with the greatest implications for our most vulnerable members of society.

We have an obligation as healthcare providers to keep our patients safe, and we can’t afford to rush the decision about whether assisted suicide is sound public policy. Please use your voice. To take action in California, write to your Assembly member (find yours here) and Governor Brown.

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