GeriPal - Geriatrics and Palliative Care Blog

Appearances can be deceiving: aging, homelessness, and acute care

2013-06-17T15:34:00.001-07:00

Before reading any further, stop to think about the last older homeless adult you saw. If you are a clinician – think of the last older homeless patient you cared for – if you can remember the last time you had such an encounter in acute care settings such as the ED or hospital, even better.

Does this person you remember look anything like the gentleman pictured here?

Probably not...

...but here’s the catch: the odds are very good that you've met someone (maybe even provided clinical care for someone) who was without a home but you didn't know it because they didn't “look homeless.” In a study published this month in the Journal of Healthcare for the Poor and Underserved (JHCPU), my colleagues and I described the experience of acute care from the perspective of 100 homeless individuals seen in the ED or hospitalized over a 1 year period in New Haven, CT. We found that only 2 in 5 were ever asked about their housing status during the course of their care at the hospital. Not surprisingly, those who were asked were several times more likely to receive high-quality discharge planning based on their needs (e.g. discussions about costs of medications and transportation). Compounding the problem of using the “eyeball test” to determine who has unstable housing, many patients are hesitant to disclose their need for fear of discriminatory care or simply from embarrassment – this may be particularly true for older adults.

Our results were the result of a community-based participatory research project with Yale-New Haven Hospital and Columbus House, a robust homeless services organization that operates 2 large shelters in New Haven. Leveraging the strengths of this unique partnership, we also found that lack of coordination between the hospital and shelter was a major barrier to successful transitions for patients. As one patient explained, “miscommunication is a problem – sometimes the hospital sends you to the shelter, but you can’t get in.” Indeed almost 1 in 3 patients were discharged after dark and 1 in 10 spent their first night after discharge on the streets. Fortunately, data from this project led to a community taskforce including the hospital, shelter, city and state government to develop a respite care unit within the shelter for homeless patients requiring special care after discharge (such as daily wound care or IV antibiotics). A bill supporting this project passed the Connecticut State Legislature in Month and the respite unit will open this fall.

Many cities like New Haven are joining the movement to increase access for homeless patients to respite care after hospitalization both for reasons of quality improvement and cost reduction. In a systematic review also published this month in JHCPU by Kelly Doran, current Robert Wood Johnson Foundation Clinical Scholar at Yale and leader in the New Haven Respite Taskforce, shows that respite programs consistently reduce the length of hospital stays, hospital readmissions, and overall costs of care for homeless adults. Despite these encouraging results, there is still work to be done. Although the mean ages of patients enrolled in the 13 studies analyzed in this review were in the mid-to-late 40s, there were no respite studies with resources specifically geared for older homeless adults.

As the homeless population continues to age, improving the quality and continuity of care for homeless adults is becoming ever more important. As my colleague Rebecca Brown points out in a study published this week in JAMA Internal Medicine, the average age of homelessness has increased from 35 to 50 over the last 20 years and older homeless adults access acute care services at extraordinarily high rates. In a cohort of 250 older homeless adults in Boston, 2 in 3 visited the ED in the last year and almost 1 in 3 visited the ED 4 or more times. The presence of geriatric syndromes such as falls and impaired executive function were powerful predictors of frequent ED use. In another study published this month in JHCPU, she also demonstrates that even the “younger” adults in this “over 50” cohort are at high risk for these geriatric syndromes.

These findings have important and unfortunate implications for these patients as well as our healthcare system – an ED clinician looking at a 55 year old man with an injury or musculoskeletal complaint might not think to ask if he is homeless and might not consider the patient’s risk for geriatric syndromes. In medicine, appearances may be deceiving but this shouldn't prevent clinicians from making a difference for this population. Patients in our community-based study recommended that clinicians take a simple, patient-centered approach to assessing housing needs: rather than ask patients who “look homeless” the usual, pointed questions of “are you homeless?” or “do you have a permanent address?” acute care providers can simply and compassionately ask all their patients, “do you have a place to stay where you feel safe?” Personally speaking, I probably would never have guessed the gentleman pictured above – a former client at Columbus House shelter in New Haven – was homeless if I had met him in a busy Emergency Room. To provide the best possible care for this highly vulnerable population of seniors, our first and perhaps greatest challenge might just be to look past our preconceived notions to learn who these patients are.

By Ryan Greysen

Photo by Robert Lisak for Columbus House, Inc.

Hospice and the Transgendered

2013-06-12T10:55:00.001-07:00

by: Robert Killeen MD

Hospice is beset by many societal obstacles in its care of the transgendered patient. I saw a most recent example of this in our local community hospice. An elderly female (MTF) transgendered patient had developed metastatic cancer. Chemotherapy had failed and had left her profoundly weak and infirmed. Estranged from her family, she had only a few friends to rely on but then only intermittently so. Hospice admitted her to their IPU and, with supportive care, her overall status did improve. However, now she was in a dilemma. She was well enough to leave the unit but not well enough to go home. Too poor to afford a single room, the patient was unable to be placed. Chronic care facilities viewed her as if she were both male AND female. This prohibited her placement with a roommate. As she was physically female she wished to have a female roommate; the facilities saw her as originally 'male' and either could not or would not comply. In the end, she remained at the hospice center for the remainder of her life. While the hospice provided her with exemplary care, the obstacle of society's views on gender prevented her from ever leaving the unit.

The transgendered population confronts a myriad of difficulties which hospice must also address. Socially, transgendered folk, gentle folk, find themselves relegated to a near-netherworld existence. Forced to society's fringes they feel isolated, even abandoned, by family and friends. They may find their friendships restricted to a "gay-friendly" environment or to other 'T-girls'. Many T-girls succumb to a personal economic collapse with a loss of job, loss of insurance, and even a homeless existence. Their health can deteriorate with severe depression being a foremost finding. Impoverished and despondent, they may turn to alcohol or drug abuse. They may engage in risky behavior for hepatitis and AIDS. Many transgendered people would shun medical care until their health status has deteriorated to the extreme. In an era when patients can be nudists, "fuzzies", or carry tattoos of violent causes (eg. Nazis), why must the transgendered have fear of disfavor from a medical staff corrupted by society? Their only supposed crime is gender. In the Virginia Transgender Health Initiative Study almost half of the transgendered patients felt that their doctor had little or no knowledge of transgendered health issues. Roughly half of patients surveyed felt uncomfortable discussing their transgendered issues with health care providers for reasons like fear of ridicule, hostility, insensitivity amongst personnel, and refusal of treatment. About a fourth of those surveyed had experienced discrimination by medical providers. As these patients avoid medical care their acutely treatable conditions may progress to chronic, or more terminal illnesses or be complicated by other maladies.

The transgendered population is often helpless to find support for their health care. Transgendered people are a 'minority of minorities', "society's most vulnerable population" as per the Reverend Stan Sloan of Chicago House, creator of the TransLife Center. The center offers a haven to a people who sometimes find themselves unwelcomed at homeless shelters, are ignored by charitable institutions, and report feeling forgotten by the gay community. While gay and lesbian awareness progresses, transgendered support appears stagnant. Hospices need more resources to draw on for the special problems of transgendered patients, perhaps something more than just sources adjunct to the gay and lesbian community.

Schaffer N. "Transgendered Patients: Implications for Emergency Department Policy and Practice". J Emerg Nurs 2005. 31:405-7

Xavier J, Honnold J, Bradford J. "The Health-related Needs and Lifecourse Experiences of Transgendered Virginians". Virginia Department of Health. 2007.

Prognostic Disclosure and Other Palliative Care Needs in Dialysis Patients

2013-06-06T16:20:00.000-07:00

"Doctors are terrible at prognostication."

This is a line that I often hear from other doctors in clinical practice. While relatively untrue purely based on prognostic accuracy (our prognostic estimates do correlate with survival), this phrase is absolutely true when it comes to the delivery of prognostic information to our patients.

Further evidence of this was revealed in a recent study of prognostic disclosure in dialysis patients published in JAMA Internal Medicine. The gist of the paper is that prognosis is rarely discussed with patients receiving dialysis leading to significant discordance between what nephrologists and patients think is the prognosis, as well as their beliefs on their candidacy for kidney transplant.

The authors’ of the study enrolled patients from two hemodialysis units affiliated with academic medical centers. All of these patients were seriously ill, based on a predicted risk of dying in the next year of at least 20%. Among the 62 patients interviewed, the study found:

Not a single patient reported receiving an estimate of life expectancy from a nephrologist
Nephrologists reported having given prognosis to only 2 patients of these 62 patients
Nephrologists stated that they would not provide any estimate of prognosis even if their patient insisted for 60% of patients

The results also revealed that even though patients’ more optimistic 1-year survival expectations were more accurate than those of their nephrologists, patients’ longer-term survival expectations significantly overestimated even their actual 2-year survival rates:

Only 6% of dialysis patients thought they had less than a 50% chance of being alive in 5 years. Unfortunately, nearly half of the interviewees were dead at less than 2 years of follow-up.
Nephrologists were more accurate with longer term survival as they estimated that more than half the patients had a likelihood of 5-year survival below 40%
Lastly, more than 1/3 of patients whose nephrologists said they were not transplant candidates believed they were.

Prognostic disclosure is just one area that we need to do better on in the care of older adults with End-Stage Renal Disease (ESRD), as articulated in another paper published today in the Clinical Journal of the American Society of Nephrologists. This paper, co-authored by Manjula Kurella Tamura and Diane Meier, discusses both the needs of individuals with ESRD and the barriers to providing high quality palliative care in this population. It also provides a way to improve the quality of care by giving us five priorities for action to improve quality of life for ESRD patients. These five priorities are:

Universal screening for palliative care that includes symptom assessments and treatment algorithms, as well as us of simple prognostic tools to identify high risk patients
Incorporate palliative care measures in the ESRD Quality Incentives Program (QIP)
Train the nephrology workforce to deliver palliative care
Payment reforms for palliative care services
Fund palliative care research

I couldnt agree more with these 5 priorities as we have talked about some of these in previous GeriPal posts. In particular, Alex Smith has talked about the lack of research funding for examining communication, quality of life, and other outcomes of older adults with ESRD. For example, he cited a study showing that between 2001 and 2005, no NIH grants supporting palliative care research were funded by the National Institute of Diabetes and Digestive and Kidney Diseases (NIDDK).

We can do better. We are not that "terrible".

by: Eric Widera (@ewidera)

Note - here are other GeriPal posts on Palliative Care needs of ESRD patients

Clinical Trials Discriminate Against Older Persons with Diabetes

2013-06-03T11:34:00.002-07:00

by: Ken Covinsky (@geri_doc)

Over half of persons with type 2 Diabetes are over the age of 65. You would think that there would be tons of research studies that tell us how to best care for older persons with diabetes. But the truth is that our understanding of geriatric diabetes is a vast wasteland. Most major studies of diabetes have excluded older persons or have excluded older persons with co-existing disease or functional impairment. Studies rarely tell us how treatment for diabetes impacts problems older persons care about such as functional impairment, cognitive function, falls, and incontinence.

But surely help must be on the way. There has been a lot of attention recently to the issue of diabetes in older persons. So, it must be the case that current studies of diabetes are starting to show they care about the real world patients with diabetes who are older and often have lots of other medical problems in addition to diabetes.

Well, think again. A study in the Journal of the American Geriatrics Society shows that things are not getting better at all. Current ongoing studies of diabetes are still characterized by pervasive and systematic discrimination against older patients.

The authors analyzed 440 protocols of ongoing studies of type 2 diabetes. The findings are very discouraging:

66% of studies excluded subjects using an arbitrary upper age limit. Upper age limits are almost never justified. Even when drugs are tested in mostly younger patients, they get heavily marketed and used by older patients

77% of studies excluded subjects with comorbid conditions--diseases in addition to diabetes. An acceptable justification for exclusions based on comorbidity was provided less than a 25% of the time. The vast majority of patients with diabetes have comorbidity. It is crucial we learn how comorbidity impacts the outcomes of treatment. Exclusions based on comorbidity often makes the real world application of diabetes studies uninterpretable.

The authors note that responsibility for age discrimination rests with multiple players and notes responsibility of these players going forward:

Regulatory agencies such as the FDA must develop clear regulations that demand drugs will be tested in the patients that actually will use them before they are allowed to be widely used

Funders such as the NIH should stop turning a blind eye towards ageism in clinical research

Human subjects committees should avoid approving protocols that needlessly exclude older subjects

Older patients and those who care about them should insist that research that improves their care is a major societal need

When Not to Follow an Advance Directive

2013-05-27T14:05:00.000-07:00

by: Eric Widera (@ewidera)

An 85-year-old woman with moderate Alzheimer’s disease who enjoys walking in her nursing home's garden with her walker has fallen and broken her hip. An advance directive signed by the patient states a preference for “Comfort Measures Only,” and specifically states that she does not want to be transferred to the hospital. The physician believes that surgery would provide long-term pain relief and the chance to maintain some mobility.

What do you do? How do you reconcile her previously expressed hypothetical wishes in an Advance Directive with what is now a rather unanticipated scenario?

In a paper published today in JAMA Internal Medicine, Alex Smith, Bernard Lo, and Rebecca Sudore developed a 5-question framework to help physicians and surrogates through the decision making process in time like this. The framework proposes 5 key-questions to untangle these conflicts:

Is the clinical situation an emergency?
In view of the patient’s values and goals, how likely will the benefits of the intervention outweigh the burdens?
How well does the advance directive fit the situation at hand?
How much leeway does the patient provide the surrogate for overriding the advance directive?
How well does the surrogate represent the patient’s best interests?

So, how do the authors balance her previously expressed wishes with that which her surrogate may think is in her best interests?

Based on the framework, the paper argues that it is ethically appropriate for the physician and daughter to override the patient's previously stated wishes in her Advance Directive and transfer her to the hospital for surgery. The situation isn't an emergency, the benefits of pain relief and quality of life with surgery likely outweigh the harms, the advance directives are not a perfect fit and they also grant the surrogate leeway, and the surrogate represents the patients best interest well.

Do you agree?

NOTE: This is one in a series of posts for "Code Discussion Week." Here is a list of the rest:

CPR Discussions and Harm Reduction

2013-05-26T07:03:00.001-07:00

"I Would Just Want a Few Shocks"

By: Bree Johnston

One issue that I think we have not examined sufficiently is the impact that repeated discussions about code status have on patients, family, and health care providers. I believe that repeated discussions about CPR are traumatic to the patient and family, erosive of trust, ineffective, and tend to distract the treating team from discussions and interventions that could be beneficial to patients and families.

I believe that is much more productive to think about harm reduction than to try to talk patients and their families them out of CPR. I agree with Blinderman, Krakauer, and Soloman that we need to think more actively about not offering CPR as an ethical option that is an appropriate path to harm reduction in some instances. This is the approach in the UK, and when I was there during the summer of 2010, I found that it was refreshing not to have to focus so much time on the code discussion.

Many hospitals have non-beneficial care policies in place in order to deal with patients and families who request non-beneficial care. In many institutions, the ethics committee must be called before this policy is invoked. In my experience, this policy is often used as a policy of last resort, and is not utilized often. I think that it may actually be kind to invoke these policies more commonly in instances in which families are traumatized by the burden of making end of life decisions.

Families feel a tremendous burden when making life and death decisions for a loved one. Depression, anxiety, and post-traumatic stress are common in such situations. Researchers have found that families facing end-of-life decisions in the ICU frequently desire more guidance than they actually receive. There is evidence that treating team support and communication can ameliorate some of the distress associated with the stress of having a loved one who is critically ill. In my experience, some family members are particularly traumatized by being the person who is “pulling the plug”. In these situations, taking some of the burden off of the family by taking the responsibility can be an act of kindness. When these policies are utilized, they will be most effectives if presented in a supportive rather than a paternalistic, heavy handed way. I say things such as “We want to offer all treatments that are likely to help you. In your situation, we think CPR won’t be helpful because it won’t reverse your underlying problem, and it is likely to cause more suffering. How do you feel about that?” In most, but not all, situations, that approach helps guide patients away from CPR who are unlikely to benefit.

Another avenue to harm reduction might be a short code (which Quill, Arnold, and Back discuss in their 2009 article in Annals of Internal Medicine). And I am finding that patients increasingly ask for limited resuscitation interventions, perhaps because of educational efforts around CPR or because of depictions of CPR on television. I find that commonly expressed sentiments include “I would just want a few shocks”, “just try to get me back and if it doesn’t work, let me go”, or “I want you to try – but don’t use machines. “

For much of my career, I have been frustrated at these requests. And I have heard many of my colleagues balk at these requests for “designer codes”. However, desire for a short resuscitation effort has some logic behind it. Outcomes are often good after short resuscitation effort, particularly if the patient has ventricular fibrillation/tachycardia. Many patients would want to be treated for these rhythms but would not want prolonged ICU care.

Any legitimate code must follow ACLS guidelines, and a short code is no exception. ACLS guidelines leave the duration of the code to the discretion of the attending physician and the code team. It is ethical to “call” a code after a reasonable amount of time if the interventions are not succeeding and the prognosis pre-code was dismal. A short code is not the same as a “show code” or a “slow code” – it is a legitimate resuscitation attempt, but an abbreviated one.

Unfortunately, a “short code” is not recognized as a legitimate request in most settings. Most order sets and POLST forms don’t have such subtleties written in – CPR decisions are black and white. For patients who have extremely poor prognostic characteristics who desire CPR, a short code may be a reasonable compromise if other avenues of harm reduction fail. It provides the patient and family with assurance that a potentially easily reversible condition won’t be neglected, but it minimizes the risk of initiating a prolonged ICU stay that is likely to be harmful to the patient and costly to society.

A challenge with the concept of a “short code” would be how to operationalize it. Any attempt to define a “short code” would be somewhat arbitrary, and should probably be debated if people think that the concept has merit. CPR survival goes down after 10 minutes, so that might be a reasonable cut-off. In addition, a “short code” might also be defined as one that is not associated with intubation, just support with airway positioning and ambu bag ventilation. Critical to the short code concept is that is defined, agreed upon, and used only in limited circumstances. In addition, the concept should be disclosed to the patient/family.

I look forward to an active debate on this!

NOTE: This is one in a series of posts for "Code Discussion Week." Here is a list of the rest:

Discussing CPR: What Makes It So Different?

2013-05-24T03:00:00.000-07:00

by: Josh Lakin, MD Palliative Care Fellow, UCSF

This week has been full of active discussion around “the code”. As a malleable and growing fellow in palliative care, I believe that I have spent more time on the single intervention of CPR than I have eating breakfast over the past 300 and some change days. As such, the discussion around code status, what to call a code or a lack thereof, and the default with which the medical system presents our patients have been incredibly interesting for me.

But, as Diane Meyer, Rebecca Sudore, and Craig Blinderman all discussed in their replies to Alex Smith’s post from this week, possibly the more salient and controllable piece for care providers is the conversation around goals and how we recommend or don’t recommend therapies in light of those goals.

In that light, I would again like to call attention to the study that Craig brought up in his reply to Alex’s post . In that March 2012 JAMA thought piece, Craig, Eric Krakauer and Mildred Solomon laid out a practical 3 pronged approach for making recommendations around the medical intervention of CPR based on clinical assessment of its risks and benefits for a particular patient based on his/her disease and goals. Their three categories are as follows:

Consider CPR as a Plausible Option – for situations where the benefits and risks of the procedure are unknown in the context of the patient. The example they use is for patients who have chronic illnesses that have not yet reached end stage. For this group, they recommend exploring and addressing patient beliefs around their disease and record patient preferences based on a “nuanced understanding of the patient’s’ values.”
Recommend Against CPR – for situations where there is a low likelihood of benefit of CPR, such as in end stage advanced illness. In my experience this year, this group is the one for which Palliative Care is often called with the consult of “the patient just doesn’t understand his illness and his goals. He tells me he is ready to die peacefully but he wants CPR.” The authors’ key point here is to be able to keep an open mind for “unique personal, familial, religious, or cultural factors that might make an attempt at CPR unusually beneficial.”
Do Not Offer CPR – for patients who are dying imminently. The authors then make the point that, in this situation, “the decision not to offer CPR should be disclosed to the patient or surrogate.”

As a learner, I find this framework especially helpful as it gives me a guide for my daily work and, maybe more importantly, it gives me a guide for teaching other trainees in the hospital who seem to lump everyone into the first category. However, I’ve been struggling this year to understand why we treat CPR so differently than other procedures, such as feeding tubes or surgery, where the decision neither to offer nor disclose seems to come more naturally. I have yet to find a satisfying legal, ethical, or scientific explanation for why that is so.

As such, I am still wrestling with the final point in option 3: that we still need to disclose our decision not to offer CPR. It seems that we frequently don’t disclose a common decision not to dialyze the patient dying of renal failure from complications of metastatic cancer, for example. So, why do we need to disclose the decision not to do CPR?

What is it about CPR that makes it so different from other procedures? At first I was thinking that it is the great risk incurred in not doing it. But then, one could make the same argument for hemodialysis or for exploratory laparotomy for bowel ischemia if you made the time frame just a bit longer from minutes to hours or a few days. Then I was thinking of the concern for causing regret for the patient or family later if they learn that it was an option and wish that it had been done. Again, I feel that deep regret could surface from the same realization around feeding tubes or dialysis. Maybe it is just a cultural norm in medicine to treat CPR differently from other therapies.

Clearly, as everyone I mentioned before pointed out, decisions around these interventions MUST be rooted in a process of gaining a solid understanding of patient goals and a thorough assessment of risks and benefits of the procedures and that remains the key imperative highlighted in this article and on this blog this week.

But, all that said, I am still at a bit of a loss: Why do we feel the imperative to discuss and/or disclose this procedure with those who will not benefit from it (barring “unique factors”)?

Or maybe the question could be turned around: Why don’t we always discuss and/or disclose decisions about other non-beneficial procedures, such as not offering dialysis to patients?

What is it that makes CPR different?

NOTE: This is one in a series of posts for "Code Discussion Week." Here is a list of the rest:

What Is A "Natural" Death, Anyway?

2013-05-23T03:00:00.000-07:00

by: Alex Smith, @alexsmithMD

Eric kicked off the week posting about a study comparing use of the phrase "Allow Natural Death" with "Do Not Resuscitate." Surrogates were far less likely to opt for CPR if the physician used the phrase Allow Natural Death.

But here's the thing - what is a natural death, anyway?

I get it - death is part of the cycle of life. Seasons change. The moon waxes and wanes. We are born. We die. Death is natural.

But what is a "natural" death? Seriously, what comes to mind when you think of natural death? Here is a video of a natural death, taken from the Planet Earth series by the BBC's NATURAL History unit (you can skip the add after a few seconds):

Death in nature is often violent, brutal, and messy. The same adjectives could be used to describe a code.

If the video doesn't make the point, perhaps a story will. (Thanks to Amber Barnato for this story, I'm anonymizing it).

A man pressured his pregnant wife into trying a "natural" birth, without an epidural for pain.

Years later, the man started experiencing crushing chest pain. His wife brought him to the emergency department. He was diagnosed with a heart attack.

The nurse prepared to give him some morphine for the chest pain. The man's wife stopped the nurse, and said, "I think we should let him have a 'natural' heart attack.'"

Who decides why one things is natural, and another isn't?

OK, now I'll fess up. I use the words. Or something like it. I say, "This is about how your father is going to spend the remainder of his time. I suggest we don't prolong his dying, and let nature take its course." It helps with framing.

There is something more natural about dying in our hospice unit than in the ICU with a big team of residents thumping the chest. For many, including myself, the idea of a natural death is something more like a peaceful death, free from invasive medical interventions. While peoples conceptions of "natural" death will vary, most people don't think of sharks eating seals.

But do I worry about it? Sometimes. It's hard for people to refuse to do the "natural" thing, right? That's one reason there is all this angst and guilt among women who plan to have a "natural" birth, but then relent and ask for an epidural.

There is an ethical line between persuasion (the use of facts to make a reasoned argument) and coercion (threat with injury). Persuasion is ethically permissible, coercion is not.

CPR could be described as pounding on the chest, cracking the ribs, and electrocuting the patient. On the one hand, that sounds like battery, and seems "un-natural" to me. On the other hand, does the word "natural" attribute desirable qualities to a death without CPR, and undesirable qualities to death with CPR, without clear justification? Is it too judgmental? Do we cross that line from persuasion to coercion by using the term"natural?"

NOTE: This is the fourth in a series of posts this week for "Code Discussion Week." Come back everyday this week for a new post focused on CPR AND DNR Discussions.

Here is a list of the rest:

The Clinician as the Choice Architect - Nudging an Informed Choice About CPR

2013-05-22T16:00:00.000-07:00

by: Eric Widera (@ewidera)

In the first two posts of “code discussion week” we talked about how preferences for cardiopulmonary resuscitation (CPR) are not necessarily deeply held, rather they are highly susceptible to the way we present information and choice to the decision maker. As clinicians, we can potentially use this knowledge about how to influence others to “nudge” individuals to make decisions that may be in their best interest, while still preserving their autonomy as they can easily choose otherwise.

One can argue though that using these techniques to influence decisions should be avoided as we are not really helping our patients make truly informed decision making, we are just being manipulative. Furthermore, the most vulnerable of our population may also be the most susceptible to effects of these nudges through the way we frame choice.

For me, the way to reconcile the importance of the nudge while also promote truly informed decision-making is to view the clinician as the Choice Architect. Our goal as the architect is to create an environment that counteracts cognitive biases and inaccurate perceptions which currently exist in our patients and which hamper informed, rational decision-making that is consistent with our patients' goals.

One way to help create such a choice environment when discussing CPR is to use videos to help with decision-making.

A Different Type of Nudge - Video Assisted Decision Making

Most people have widely inaccurate views of the risks and benefits of CPR, as well as what actually happens during a resuscitation. It’s probably not as bad as this Scrubs clip, but it’s probably not to far off:

Angelo Volandes is working on changing those inaccurate perceptions. The Atlantic recently ran an in-depth piece on the work Volandes is doing to help change the way individuals make decisions in a wide variety conditions. Several of the videos, which can be viewed here, help individuals make decisions about CPR. As opposed to the Scrubs clip, these videos show what CPR really looks like (although on a mannequin and not has chaotic as the real thing). They also describe, in general terms, the outcomes of CPR in a way that would matter to most patients.

The data backs up the work Volandes is doing. Study after study of his demonstrate that individuals using a video decision support tool are more likely to choose less aggressive care, including less CPR, than those who solely listen to a verbal narrative. For instance, in a randomized controlled trial published this year of 150 patients with advanced cancer, 48% wanted CPR after being verbally told about it, compared to 20% in the group who also watched a video actually showing CPR.

You Are the Choice Architect Whether You Like It or Not

We are the architects of choice. We plan, design, and oversee the construction of medical decisions. Our goal should be to help individuals make decisions that are most consistent with their goals through various means, which may include videos, alternative framing of DNR orders, or changing of defaults.

Some clinicians may not like the idea of being a choice architect. Unfortunately, there is no way of getting around the fact that they way we present information and choice will always carry with it at least subtle forms of influence. Even if this wasn't the case, the defaults that the current system has in place will act in a way to nudge individuals down an aggressive end-of-life path that often carries very little benefit.

NOTE: This is one in a series of posts for "Code Discussion Week." Here is a list of the rest:

Changing the Default Code Status to DNR for Seriously Ill Patients

2013-05-21T03:00:00.000-07:00

by: Alex Smith @alexsmithMD

What if the above form was the default for patients with serious illness? Most current advance directive forms and the POLST have no default - although one could argue that our default without a form is full code. But what if we could set a default on these forms, so that when a patient received a diagnosis of a serious life limiting-illness, the default option was Do Not Resuscitation (DNR)?

Scott Halpern and colleagues tried this approach in a study published in Health Affairs of 132 seriouly ill outpatients with incurable diseases. Patients were randomly assigned to complete one of three advance directives:

Comfort default: default of DNR.
Life-Extension default: default "full code."
Standard advance directive: patients chose preferences for rescusitation.

Patients in the two "default" pathways could change their advance directive by crossing out the default, initialing the cross out, and selecting another option. You can see examples of all three advance directive forms in the appendix.

What did they find?

Nearly 80% of patients in the comfort-care default accepted the default.
61% in the standard advance directive chose comfort care
43% in the life-extension default crossed out the default and changed to comfort care
After explaining the manipulation of the study forms into 3 possible advance directives, only 2.1 of patients changed their selection. People were pretty content with what they selected the first time around.
Satisfaction with the advance directive form was high for all 3 versions of the form.

What's it all mean? Defaults matter. Defaults are part of the behavioral economics revolution, a subject we've discussed previously on GeriPal. This study suggests that peoples preferences for resuscitation are not deeply held, they are highly influenced by the (somewhat) arbitrary choice of the default options. This may be true because people have very little previous experience to ground their preferences, and often have no idea what sort of care they would prefer in a future state near death.

Should we change the default choice for patients with seriuos life-limiting illness to DNR? Why not? Seriously. As long as you give the patients a clear path out of the default, why not?

To be sure, the forms matter far less than the discssion. But let's not kid ourselves here, folks. Even if we try our best to educate all clinicians about how to have high quality discussions, the forms matter. Forms will inevitably be used to guide the discussions and influence patient choices.

So I'm waiting to hear of the first health system to try it. Once we have one or two, others will be brave enough to follow. Why aren't we changing? Because, as this study shows, it's hard to go against the default!

NOTE: This is the second in a series of posts this week for "Code Discussion Week." Come back everyday this week for a new post focused on CPR AND DNR Discussions.

Here is a running list:

It’s all in the Framing: How to Influence Surrogates' Code Status Decisions

2013-05-20T09:08:00.001-07:00

by: Eric Widera (@ewidera)

We intuitively know that the words we choose when talking about whether or not to attempt cardiopulmonary resuscitation (CPR) may influence the decision of a surrogate. Now we have some evidence to back this up thanks to a fascinating study published in Critical Care Medicine by Drs Amber Barnato and Bob Arnold at the University of Pittsburgh.

The study randomized 256 adult children or spouses to take part of a Web-based interactive simulated family meeting. These surrogates were asked to imagine their loved one in a hypothetical situation in which they were admitted to the intensive care unit (ICU) on life support due to a pneumonia, severe sepsis, and acute lung injury. During the simulated family meeting, the actor playing the ICU doctor tells the surrogates that their loved one has a 10% likelihood of survival to discharge in the event of cardiac arrest requiring CPR. The actor then asks the surrogate to decide the patient’s code status. The trick though with this study is that the way this was communicated was slightly different for subjects randomized to various experimental conditions.

Condition 1: The Effect of Physician Communication Behaviors

Three framing manipulations took place at the end of the family meeting when the ICU doctor asked about the patients code status. The results showed that:

Framing treatment decisions as the patient’s, not the surrogate’s decision did NOT impact CPR choice. (56% vs 56%)
Framing the alternative of CPR as “Allow Natural Death” instead of “Do Not Resuscitate” significantly decreased the surrogates choice of CPR for their loved ones: 49% vs 61%
Framing the decision as the social norm (the ICU doctor said that in her "own experience" most other family members were more likely to choose DNR) also significantly decreased CPR choice.

If CPR was framed as the norm, 64% of the surrogates chose it.
If no CPR was the norm, 48% chose to CPR.

Condition 2: The Effect of Attending To Emotion

Some of the surrogates were also randomized to the “emotion-attending condition” where the ICU doctor used the NURSE mnemonic (naming, understanding, respecting, supporting, and exploring emotion) and one “I wish” statement.

Like in Alex Smith's GeriPal video, attending to emotion using mnemonics like NURSE did NOT significantly impact decision making. 53% chose CPR in the empathic statement group vs 59% in those without empathic statements.

Condition 3: The Effect of Emotion Arousal

In this last experiment, surrogates randomized to the “emotion arousal” group saw a photo of the spouse/parent for whom they would be making the hypothetical code status decision. They were also asked to do two imagery exercises “designed to create a state of emotional attachment.”

Interestingly, as opposed to what you may have thought, priming the emotional attachment pump did NOT impact CPR decisions: 56% chose CPR in the emotionally aroused vs 56% in the unaroused group

Conclusions

What's the take home? No, it's not that you needn't pay attention to emotions. Alex's Take-Out-the-Trash video is a good example of what happens when you try to use empathic statements without actually being empathic (the authors admit that the actors just read the scripted statements and did not otherwise respond differently to the emotional content of the surrogates).

The take home is that we have a lot of responsibility when facilitating CPR discussions. Framing CPR decisions using social norms or framing CPR's alternatives in a different light (Allow Natural Death instead of Do Not Resusciatate) can significantly influence surrogate decision-making. Whether or not that is a good thing I'll leave to a follow-up post...

NOTE: This is the first in a series of posts this week for "Code Discussion Week." Come back everyday this week for a new post focused on CPR AND DNR Discussions.

Here is a running list of posts:

Point/Counterpoint: Using Deception, Study Finds Clinics Violate Disabilities Act; Should Clinics Be Protected?

2013-05-13T13:00:00.000-07:00

Point: Physicians do not deserve IRB protections like vulnerable patients

by: Sei Lee

The recent article by Lagu and colleagues entitled, “Access to Subspecialty Care for Patients with MobilityImpairment” in Annals of Internal Medicine found that when subspecialty practices in 4 US cities were contacted about a patient who was obese and hemiparetic, 22% stated they could not accommodate this disabled patient. As disturbing as this finding was, I was even more surprised to hear that the authors were required by their Institutional Review Board to shred identifying information as soon as research was completed. Thus, when they were contacted by the attorney general in one city and asked to identify which practices were discriminating against disabled patients, they informed the AG that at the instruction of the IRB, they had destroyed the information.

First, I am not an ethicist and therefore may be ignoring important considerations. However, it seems that research ethics appropriately centers on the vulnerable patient. Often, those who are sick and requiring medical attention may not feel that they can refuse an invitation to participate in research and are thus appropriately considered vulnerable. They need protections to ensure that powerful physicians and healthcare systems fully account for their interests when conducting research which may put them at additional risk.

In this case, it seems to me that the vulnerable population that we should be protecting are the disabled patients. Although physicians and subspecialty practices may be the research subjects here, they are not vulnerable and should not receive the same level of protections as vulnerable research subjects. Maybe the answer is not to call this research, but some other form of standardized inquiry. A colleague remarked that this seems more like investigative reporting than research, and that may be a more apt model. In this work as well as investigative reporting, the objects of inquiry are the powerful who have the resources to defend themselves if necessary. They do not need additional protections from the research protections infrastructure that has been built up to protect the vulnerable.

Counterpoint: Researchers Should Avoid Being an Arm of the Law

By: Anna Chodos, MD

The study mentioned by Dr. Lee above is unusual in two ways with regard to possible ethical violations. First, the practices that were called to request an appointment for a hypothetical patient did not go through an informed consent process because the investigators chose a “deceptive technique” to get at their research question. (In this way, as Dr. Lee points out, it seems like investigative journalism). The IRB required them to send a letter to the practices they included in their study to let them know that they had been included after the fact (and according to the lead author, Dr. Lagu, during an oral presentation of her paper, this resulted in some unfavorable responses from those practices). Second, they were required to destroy the data after the analysis to protect the subjects who subsequently could be linked to the violation of a federal law. The publication of the study led one city to call the investigators to ask for the practices’ identifying information so they could take legal action and then, when they discovered it did not exist, to consider conducting the same study themselves to get the information they wanted.

It strikes me as ethically sound that the IRB asked the investigators to destroy the information. The research question was to determine if these subspecialty practices were accessible to patients with disabilities; finding that they were not is effectively finding them in violation of the law. The main research question is equivalent to, “How often are subspecialty practices breaking the ADA and denying their services to patients with disabilities?”, and that could be seen as a legal question. These are medical researchers who are, presumably, interested foremost in the health implications of their question, though likely also interested in influencing the enforcement of this important law. But, they are neither enforcers nor defenders of the law in our society and it is not their role to aid such activity through their research in a specific way. By keeping the information with identifiers in a cabinet somewhere they would legally endanger the research subjects, ie. the subspecialty practices, beyond what these practices were already doing to endanger themselves. Again, I see it as far beyond the intention of research to directly aid enforcement of a law.

Fundamentally, I think health researchers must be careful not to consider themselves on the side of the law or not. Health researchers should be seeking to improve the health, not legal standing, of people and society. We hope laws related to public health will protect and promote health. But, as far as I can tell the law is not perfect, its enforcement is not perfect, and many laws are far from being in the right or wrong in any morally sound way. Were researchers to use their powerful tool of human observation and analysis—that has (mostly) gained the trust of people and society—with the aim of enforcing laws, they would have no credibility as objective scientists with loftier goals.

I think you can still be concerned about the ethics of this research on other counts, though. They truly may not have conducted their research at acceptable risk (to society or the subjects) for two reasons. First, the practices were not consented. The reason for this is clear because the information they would have obtained had they consented people would have been terribly inaccurate and practically useless. So the IRB evidently decided that a post-enrollment letter explaining the study was acceptable in order to answer this important question. Second, just by publishing their design, they gave anyone who wishes to enforce this law the roadmap to do it. Just have an intern with a spare half hour call all the OB/GYN practices in your city (of which they know a whopping 44% were inaccessible in this national sample). So did they effectively protect these subspecialties from being held accountable? Probably not. If these practices get fined huge amounts and close up shop, they may be able to serve no one at all. Is that fair? Frankly, it’s not my place to say.

Leadership IS a geriatrics competency

2013-05-11T15:58:00.000-07:00

by: Helen Chen, MD

Riding back to DFW on the airport shuttle after attending the Pioneer ACO presentations during the last session of the last day of #AGS13, I struck up a conversation with another attendee who is in private primary care practice. After learning that I am a PACE medical director, she responded, “What’s PACE?” I was surprised at the context, but not by the question. This is a conversation I have at least once a week in the community.

Invariably, after describing how the integrated, coordinated, PACE model of care serves frail , nursing home eligible, mostly dually eligible elders with the goal of helping them to remain in their communities as long as safely possible, most people I talk with want to know, “How can I get that for my mom, grandfather, (other older relative)?” Unfortunately, as many regular readers of GeriPal know, even though On-Lok began PACE in the early 70s, 40 years on, it is available in only 30 states, and serves a combined national panel size smaller than many FQHC systems in single states or regions. And, for elders with even modest resources, PACE is generally not obtainable because of financing or regulatory issues.

But the good news/bad news is that more recently, many health plans have taken notice. They are not waiting for the published results of various innovations or demonstration projects. Many large health systems are already looking to provide PACE-like “integrated and coordinated care” for their members, some of whom resemble the multimorbid, psychosocially complex elders cared for in PACE. Some ACOs are also beginning to bring some practical systems on line to address the needs of the complex elder. However, many of these decisions are being driven by economics: the financial incentives driving the management of adverse risk and reduction of hospitalizations and readmissions, among other outcomes.

The question is how many of us in the GeriPal world are in the boardrooms or the executive management meetings when these programs and systems are being created, or critical decisions are being made? We are a small tribe, but the very patients we care deeply about are going to have a lot of skin in this game. We need to effectively leverage our leadership abilities and skills. And, those of us who are directly involved in education need to prepare our fellows and other trainees to take on these leadership challenges which in the near term must include systems redesign and increased attention on “quality”. Otherwise, we will run the risk of continuing to be small islets of geriatrics excellence unable to influence much change in the choppy seas of “innovation” that may not adequately meet the needs of older adults, especially those who are the most complex.

by: Helen Chen, MD

When Staying Silent is No Longer Acceptable

2013-05-09T13:00:00.000-07:00

A Guantanamo detainee's feet are shackled to the floor, April 27, 2010. (AP Photo/Michelle Shephard, Pool) (Credit: Associated Press)

Recent issues in the news these past weeks have given me pause to reflect on my social responsibility as a physician in my global, national and local community. I do not think I was alone in being shocked and angered when I read Kellermann’s and Rivara’s perspectives piece in February’s JAMA highlighting the systematic and complete stifling of scientific inquiry into the impact or effects of gun related violence. Starting with cutting CDC funding by $2.6 million dollars-the exact amount budgeted for the Center for Injury Prevention. When this money was eventually restored it was earmarked for traumatic brain injury research. The final appropriation contained language that no funds for injury prevention or control could be used to promote or advocate gun control. This vague yet restrictive language effectively halted research into gun violence. This edict was later extended to all Health and Human services agencies including the National Institutes of Health. What continues to disturb me is the question-why was this tolerated for 17 years? Where were the public health advocates? Where was I? Why was any special interest or agenda allowed to suppress the intellectual freedom of scientific research?

This past week’s story of hunger strikes at Guantanamo Bay hit even closer to home, at least in a philosophical metaphorical sense. Over a hundred prisoners have been on a hunger strike as conditions deteriorate at the prison with no resolution in site. Due to concerns of starvation and death, military officials at the prison have ordered the forced placement of an NG tube to deliver artificial nutrition to Guantanamo Bay prisoners against their consent. We, as palliative care providers, are the champions and guardians of autonomy. We work to ensure that patient preferences are respected and honored. Autonomy forms the cornerstone of Western bioethics. This means consent for medical interventions and the freedom to refuse these interventions. The autonomy of prisoners is afforded extra protection under the Belmont report -as vulnerable agents at risk of coercion, medical research must undergo additional scrutiny.

Undoubtedly, the situation at Guantanamo is complicated. Large-scale deaths of prisoners due to electively forgoing food and water for the purposes of political protest could lead to massive and even violent demonstrations throughout the Islamic world. This administration has faced many difficulties and challenges in its efforts to close this facility. However, when the twice daily forced placement of NG tubes for the purposes of delivering artificial nutrition came to light, Ronald Flanders, a spokesman for the U.S. Southern Command, stated that the technique is similar to that used for elderly and small children. The aspects that seem quite different to me, is that the prisoners are shackled at the wrists and ankles for this procedure and do not give consent or assent.

As a palliative care physician, whose passion is to protect autonomy and the right to refuse unwanted medical interventions, I would like to join my voice to that of Dr. Jeremy Lazarus, president of the American Medical Association, and state unequivocally, that forced feeding without consent represents assault of the prisoners and violates our core ethical principles. I do not want to sit silently at the sidelines. So I will be writing my Congressional representatives as a physician to implore them to stop this human rights violation and honor autonomy. And invite other readers, who may have also been experiencing a nagging sense of social responsibility to join me in letting your voice be heard.

~Stacy Fischer, MD

University of Colorado SOM

That Place Between Youth and Scattered Ashes

2013-05-08T15:20:00.000-07:00

Marching up 5th

Being a New Yorker, I am a bit obsessed with the windows of the dowager department stores that march down Fifth Avenue. When I first moved here, I most identified with the Lord & Taylor windows -- maybe because I grew up going to Lord & Taylor on those occasions when we needed to buy a special outfit. More recently, I've been entranced by the Bergdorf Goodman windows (#BGwindows) and have photographed and blogged frequently on same on my personal blog (#BGWindows Follies, Wow!, and Head Shots).

This month, Bergdorf's landlord (a descendant of one of the original founders) released a documentary – Scatter My Ashes at Bergdorf's. In the great tradition of most big-budget fantasy movies these days, the social media folks created a game to go along with the move release. It was highly addicting (four of my windows grace this post) while it was up and a great way for me to unwind as we prepped for #AGS13 and recovered from all the hustle and bustle of our time in Grapevine. Tellingly, my first effort (Marching up 5th) is just a pretty window while the window I designed on the plane home (Reimagining Oz) asks "What if Dorothy was framed"? The prize for the winner of this social media contest is a $1,000 gift certificate - just about enough to cover a stylish pair of sensible shoes!

Channeling Gatsby

By now, you are scratching your head and wondering why I'm posting this post to GeriPal rather than my own blog. What on earth does fashion have to do with us, you are asking. A lot.

May, as GeriPal readers will know, is older American's month and I've been thinking about how we need a month to celebrate older Americans yet our youth-obsessed culture celebrates young people every day. The #BGwindows are no different. They are populated by rail-thin mannequins that are purportedly ageless but the clothing choices are clearly those of young women. The subliminal messaging if one puts the windows and the movie together? We celebrate youth but the Bergdorf's shopper is so devoted to us that she wants her ashes scattered here. Prompting me to ask David Hoey (the mad genius behind the #BGwindows):

Out and About, NYC

Isn't there a way station in between youth and the ashes that come out of a crematory that we could be celebrating? Could you ever see yourself designing windows that celebrate older women?

I know that David has it in him. I know he could design some awesome windows that celebrate older women in the the way that Sacha Goldberger celebrates his Mamika (my little grandmother). Sacha's collaboration with his 93-year old grandmother showcases Mamika as a superhero. His work has been chronicled in the New Old Age blog at the NY Times, in the Huffington Post, and on Twisted Sifter. And, if Louis Vuitton can make a life-like replica of Yayoi Kusama surely Bergdorf's could do the same with Sacha's grandmother! Mamika clearly has the chops to carry ALL of the 5th avenue windows. 93-year old superhero meets fashion on 5th Avenue -- what could be better than that?

Perhaps David Hoey would want to look a little closer to home for a collaborator. For that he could turn to photographer Ari Seth Cohen and his blog Advanced Style. There is a certain fashion panache that comes with getting older. It's less about what is in fashion now and more about what a woman's style is and Ari captures that perfectly. For this collaboration, I could see David inviting some of Ari's subjects into Bergdorf's and working with them to put together the outfits that would grace the models in his windows. Of course, those models should come in all sizes and shapes. it would even be good if some of them were wearing -- gasp -- sensible shoes and using canes or walkers.

Game of Fashion in Five Parts

Tim Gunn recently said to the designers on Project Runway, "in the real world, good fashion is both timeless and ageless." It would be great if David Hoey could exemplify that in the #BGWindows that line 5th Avenue. Timing the display for May 2014 (and then annually thereafter) -- in celebration of Older Americans month would be even better.

We need to chip away at society's obsession with youth every time we get a chance. I always figure that it is better to ask for something and not get it than to wonder "what if". Case in point? Last year I challenged FIRST Robotics to tackle aging in their competitions (Pillbox Fill: An Idea for the First Robotics Competition) and this year they did (Make It So) -- proof positive that dreams do come true. Maybe this one will too!

by: Nancy Lundebjerg

Using YouTube Movie Clips to Teach Breaking Bad News

2013-05-07T13:00:00.000-07:00

Some of my favorite teaching incorporates video. Recently, I saw an End-of-Life Nursing Education Consortium (ELNEC) DVD with movie excerpts. A GIANT THANK YOU to whoever put the ELNEC DVD together! It's a fantastic teaching tool!!!

I can't reproduce the DVD, but I thought it would be fun to try and find some of these and other movie excerpts on YouTube and create a teaching guide.

I have tried pieces of what I'm publishing below, but never all of it together. Please let us know in the comments if you try it, what works or doesn't work, or if you have other suggestions for online movie experts.

Time 30 min -1 hr, depending on how many excerpts you show, and how long you let discussion after each clip continue. Excerpt times are included at the start of each video.

Format: Show video clip, then discuss. Questions for discussion are included after each clip - feel free to come up with your own. Some of these are in-your-face, and some more nuanced.

Target Audience: Health Professionals or trainees - medical students, nurses, residents, fellows, social workers, doctors, physician's assistants, nurse practicionners - any health professional really.

Intro: All of you will have to break bad news multiple times in your professional careers. Today we're going to view movie clips that can help us become better at breaking bad news. After each video we will have a discussion.

Some of these excerpts are short, some of them long. Some of them are with physicians or nurses, some of them are not with health professionals at all. But all have some lessons for us about how to talk in a humanistic way about a potentially terrifying subject.

Legal: Using these video clips for teaching purposes is legal - see this link.

Materials: Eric tried this with our Geriatrics fellows, and recommends brining tissues - the last clip from WIT is a doozy.

1. 3:30 CLIP The first video is from the movie WIT, starring Emma Thompson, based on the play by the same name. (play this link from 30 sec to 4:05. It has Spanish subtitles, I couldn't find an excerpt without them. In this excerpt an oncologist tells a patient she has advanced cancer and leaps into discussing treatment.)

What went well about this breaking bad news discussion (this will be a challenge for the trainees, who may audibly groan at all the poor communication skills displayed. Some things did go well - checking in with the patient, making eye contact, trying to relate to her as a professor).

What did not go well? (long list, includes leaping from diagnosis to treatment without pausing, most patients don't remember anything said after the diagnosis -- use the first 2:30 sec of this how-to-break-bad-news documentary to make this point, no attention to the emotional reaction of the patient, lack of empathetic body language, use of medical terminology rather than lay language, no space for questions, no discussion of benefits and risks of chemo and impact on prognosis, or any discussion of prognosis, etc, etc)

2. 30 SEC CLIP. The second video is from the movie the Shootist, staring John Wayne as an aging sharpshooter cowboy receiving a diagnosis of advanced cancer from a doctor, played by James Stewart. (play the first 28 seconds of this link).

What went well about this discussion? (fires a warning shot, acknowledges how hard the discussion is, and when asked to give the news "flat out" he does, in no uncertain terms. He almost challenges the cowboy in an aggressive way, in a somewhat shocking manner, but this confrontational style seems suited to a sharpshooter cowboy. Difficult to see a hug working in this situation. Underlying message is you need to tailor your conversation to the patient, rather than taking a cookbook or one-size-fits-all approach)

What could have gone better? (Hard to say)

3. TWO 60 SEC CLIPS. In this clip from the movie 50:50, the Joseph Gordon Levitt character tells his friend that he has cancer. His friend, played by Seth Rogan, hears the bad news and feels sick. (play this whole clip, there is an add at the beginning, but you can skip it after 10 seconds; for a slightly funnier version with profane language, click here).

In this 60 second clip from Dumb and Dumber, staring Jim Carrey, he asks a woman he likes to estimates his chances with her. (play this whole excerpt).

Why did we play these clips? What do some patients hear or caregivers hear when we tell them a horrific prognosis? What does this say about needing to ascertain a patient's core values? (a prognosis of 50% or .1% will be terrible to some - Joseph Gordon Leveitt's character or the woman from Dumb and Dumber - and terrific to others - the Seth Rogan character and the Jim Carey character. Some are willing to go through enormous pain and suffering for a remote chance of success. Others would rather focus on quality of life rather than take such risks).

4. 2:20 CLIP. This clip from Little Miss Sunshine portrays the reaction of a teenager to the bad news that he is color blind and will be unable to become a fighter pilot. The teenager had previously taken a vow of silence, and had not uttered a word up until this point in the movie. (play this whole clip).

What does this clip say about our patients reactions to bad news? (This teenager has a visceral reaction to the news in a family setting. In a physician's office, patients may try to hold it together for social reasons, but they may be screaming inside. Contrast his reaction with the Emma Thompson character's reaction in the first clip, for example.)

5. 3:30 - 6:30 CLIP. This excerpt is from WIT again, this time with a nurse breaking the news to a hospitalized patient that the cancer is not responding to chemotherapy. (Play this link from the beginning to 3:25, or if you want to include a DNR discussion that follows the breaking bad news discussion, to 6:30.)

What went well about this discussion? (Very strong on empathy, comfortable environment, begins with shared experience of popsicles, if you go to the DNR discussions - describes concerns and outcomes of CPR).

What didn't go well? (This video was controversial when I showed it to a graduate-level nursing class - some felt the nurse overstepped her "role" and undermined the authority of the physicians, particularly by engaging in the DNR discussion; on the other hand, others noted that she said about the physicians was true, and someone needed to break the news and have a frank conversation about code status. The DNR conversation was about the procedure itself and did not start with her goals and values - this could have been better).

by: Alex Smith @AlexSmithMD

Honoring Nurses

2013-05-05T20:24:00.002-07:00

National Nurses week begins on May 6, the birthday of Florence Nightingale, the “founder of modern nursing”, and continues through May 12. The American Nursing Association can give you more information on the history of Nurses Week. And here’s a fact sheet on stats of licensed nurses in the United States and one on nurseaides/orderlies/attendants (in my opinion the unsung heroes of nursing).

Here’s the real message for the week:

No one, yup, no one in the US has not been impacted by the work of a nurse.

Our job is to protect, promote, and optimize health, prevent illness and injury, alleviate suffering, care for the sick, disabled and dying. We are bedside nurses, researchers, primary and specialty care providers, educators, clinic workers, care coordinators, discharge planners, managers, administrators, anesthetists, midwives, and more. We make sure you have the right medicines, keep you clean and safe, change your diapers, dress your wounds, clean up your vomit, put in IV lines, nasal, gastric, urinary, and rectal tubes. We work with high tech equipment and perform life saving measures on a daily basis. We hold your hand when you need comfort, sit with you in the night when you are scared, speak up for you when you cannot. Your lives and the quality of your lives are in our hands.

We work in clinics, hospitals, urgent care, emergency departments, long-term care and assisted living facilities, private homes, urban and rural communities, schools, psychiatric facilities, camps, military facilities, and industries. We are legal and insurance consultants. We help bring babies into the world; we make sure you die well. We are the frontline. We are behind the scenes.

This week I am reminded of the awe and pride I feel to be a part of this dedicated group of people called nurses.

by: Patrice Villars

Are Older Persons Being Over Treated for Nonmelanoma Skin Cancer?

2013-05-02T06:00:00.000-07:00

One could argue that nonmelanoma skin cancer should not even be called Cancer. While under the microscope it looks like cancer, it doesn't really act like what most people think of when they hear the word, "Cancer." Unlike the much less common melanoma or cancers of other organs, plain old run of the mill skin "cancer" almost never metastasizes (ie, spread to different organs). It usually grow very slowly, and is almost never fatal. Often it is asymptomatic and has no impact on quality of life. This condition just does not deserve the dread and fear associated with word, "Cancer."

Since nonmelanoma skin "cancer" usually poses no threat at all to survival, the reason to treat the "cancer" is to improve well being. We can enhance well being by treating a "cancer" that is currently bothersome to the patient, or will become bothersome if it grows and expands. But this is where it gets interesting. Since many of these "cancers" grow very slowly, some will never become problematic in the patient's lifetime. This is a very important consideration as skin "cancer" is predominantly a disease of older people. Many persons with skin "cancer" are very old or very frail. Patients with limited life expectancies may do fine with either minimal treatment, or perpaps even no treatment at all. This suggests that the best treatment for a particular "cancer" needs to consider the age and health status of the patient.

But, in actual practice, when a patientt has skin "cancer", does the treating provider consider the individual characteristics of the patient in front of them, or do they use a one size fits all approach, focusing on the "cancer", but not the person?

A fascinating study in JAMA Internal Medicine suggests we are overtreating skin "cancer" in patients who are very old or very frail because of a one size fits all approach to treatment. The study was led by Dr. Eleni Linos, with senior author Dr. Mary-Margaret Chren, both Dermatologists at UCSF. They examined treatment of patients with nonmelanoma skin "cancer" at UCSF and the San Francisco VA. They did a very interesting comparison of how skin "cancer" treatment varied in patients with long vs limited life expectancies. The limited life expectancy group included persons over the age of 85, or with many medical conditions.

They found:

Patients are almost always treated. The no treatment option was chosen for only 3% of skin "cancers". Of note, 60% of "cancers" were not on the face, and in only 22% of cases were patients significantly bothered by their "cancer", suggesting that very conservative management of deferred treatment should have been reasonable in at least some patients.

Patient characteristics are not considered in the treatment decision. There are a number of treatment options for patients ranging from very simple and less invasive options like destruction (i.e., freezing) to surgical options. The most invasive option, Moh's surgery was used in 34% of patients. Moh's surgery takes on average 3 hours and is also the most expensive option. Patients with long life expectancies and short life expectancies were equally likely to get Moh's surgery. Thus very advanced age or severe co-existing disease seemed to make not one iota of difference in treatment.

This study suggests we need to revisit how we treat skin cancer, especially in the very old. Perhaps we should at least inform patients that deferring treatment may be a viable option. When treatment is deferred, patients have the option of getting treated later if they change their mind, or the skin cancer seems to be growing. When the skin cancer is treated, patients need to have more of a say in their treatment options, and given the choice of less invasive and bothersome treatments with less risk of complications.

by: Ken Covinsky (@geri_doc)

#AGS13: Views of Geriatrics and Palliative Care from Four Continents

2013-04-30T07:12:00.000-07:00

This years' American Geriatrics Society (AGS) meeting in Grapevine, Texas, is fast approaching. The schedule is jam packed with great talks to attend. I'd like to mention one special event not listed on the final program.

The Palliative Care Special Interest Group (SIG) is schedule for Saturday, May 04, 2013 from 7:00 pm - 8:30 pm. To spice things up this year we have decided to go a little off the general SIG format. What we have in mind is combining the Palliative Care SIG with the International SIG for the first hour (7-8pm) in order to fit in the following presentation:

Difficult Conversations at End of Life (EOL): Opportunities & Techniques to Avoid Cross-cultural Landmines: Views from Four Continents

This special SIG session will be led by Maura Brennan and will feature:

Maria del Carmen Castillo Gallego, MD
Reham Shaaban DO
Ariba Khan, MBBS MPH
Michael Lerch, MD. MBA
Shobhana Chaudhari MD

Each of the speakers will will discuss Geriatrics and Palliative Care issues from the viewpoint of the 5 different countries (Spain, Germany, Pakistan, India and Egypt). It will also feature a panel discussion facilitated by Sandra Liliana Oakes MD .

After this we will split back up into our respective SIGs (or you can just enjoy what looks like will be a beautiful evening in Texas)

I hope you can attend, and don't forget to start tweeting with #AGS13

by: Eric Widera (@ewidera)

Surrogate End Points in Drug Trials: Caveat Emptor

2013-04-29T06:00:00.000-07:00

It seems like such a good idea. Before a patient takes a new drug, they would like to know that it is going to improve a health outcome they really care about. Will it make me live longer? Will it lower my risk of becoming disabled?

But the problem is that it often takes a long time for a study of a new drug to show that it has meaningful impacts on patient outcomes. Enter the brilliant idea of surrogate outcomes. A surrogate outcome is an outcome that is associated with the health outcome a patient may really care about. For example, a patient may want to take a drug to reduce their risk of getting dementia or Alzheimer's Disease. They may care so much about preventing dementia that they will even take a drug that gives them side effects. But, it may take a pharmaceutical company years to conduct a trial to determine if a drug prevents dementia.

Surrogate endpoints seem like a brilliant solution to this problem. We know that biomarkers such as amyloid, that is found on a brain scan, or tau protein, that is found in the spinal fluid, are associated with dementia. A patient may not care about reducing their level of amyloid or tau protein in and of itself. But, the theory is that a drug that reduces amyloid or tau should also reduce the risk of dementia. It will take a lot less time to prove that a drug has an effect on biomarkers than to prove it has an effect on dementia. Testing a drug and treating a patient on the basis of these surrogate markers makes it possible to bring a drug to market much more quickly.

Doesn't that sound great? Well, as eloquently described by Svensson and colleagues in JAMA Internal Medicine, it may not be so great after all. While surrogate endpoints sound good in principle, in practice they often do not work. Not only do they not work, but there are numerous examples where reliance on surrogate end points had disastrous consequences and harmed patients. Svensson notes several notorious examples in the e-table of the article. For example :

Clofibrate reduced cholesterol in persons at risk for heart disease. Lower cholesterol is associated with a lower risk for heart disease. Unfortunately, patients who took clofibrate were more likely to die.
Encainide reduces the number premature heart beats (PVCs) is persons who have had heart attacks. PVCs are strongly associated with a higher risk of death after a heart attack. Unfortunately, patients who took encainide after heart attacks were much more likely to die. It is estimated that encainide caused thousands of excess deaths.
Rosiglatazone lowers the glycohemoglobin level in persons with diabetes. Diabetes is a risk factor for heart disease and lower glycohemoglobin levels indicate better diabetes control. Unfortunately, patients who took rosiglitazone had more heart attacks.

It is curious why there is so much enthusiasm for the use of surrogate end points in dementia drug trials when there are so many examples of how the use of surrogate endpoints in other diseases led to such awful public health outcomes. Hopefully, history will not repeat itself.

by: Ken Covinsky (@geri_doc)

Do patients need to know they are terminally ill?

2013-04-26T13:05:00.001-07:00

The British Medical Journal (BMJ) has published a couple of interesting pieces this week that might interest you (controversy alert ahead at the end!). Get a copy of this weeks version and read it! (subscription may be needed for links)

First, there is a wonderful piece about an outstanding example of hospital care for patients with dementia by Kate Sartain - a celebration of good care delivery!

Next up, there is a Pair of articles discussing Prognosis Research: A framework for researching clinical outcomes and Stratified medicine research . (I wonder if Eric or Alex know any good bloggers about prognosis who could comment?)

For education of the "competent novice" there is an article on Caring for the dying patient in the hospital that is going into my teaching file (Do people still have those?) along with a thoughtful editorial by Fiona Godlee, the editor of BMJ entitled Helping patients to die well

Do Patients Need to Know They Are Terminally Ill?

Finally, there is a fascinating debate that I am really interested in seeing GeriPal readers participate in on the BMJ site. In the head to head section, two authors face off over the question of do patients need to know they are terminally ill:

Collis and Sleeman argue Yes.
Leslie Blackhall tackles some interesting issues in the NO argument. Read it. In short, the argument is that we don't know what terminal means, and the discussion can set up false choices and the real focus should be on best care. (for example, don't offer feeding tubes in advanced dementia)

I thought what was missing in the discussion was the question of suffering that comes from not knowing what to expect. I think the fundamentally important question is "What do YOU WANT to know?"

I figured my friend David Oliver, cancer patient, gerontologist and blogger ( and STAR of AAHPM 2013) would have a thought or two. He asked me to share it. Here's the whole response:

"I can hardly believe that Blackwell would propose that not revealing a prognosis to a terminal patient can be a good thing, and even beneficial. I suppose it may be beneficial and make life easier for the doctor, but certainly not for the patient. As one with Stage IV terminal cancer I can tell you right now that not knowing what is coming, and potentially when, cause far more suffering. I will use chemotherapy as an illustration. In my case, neither the oncologists or the nurse oncologist, in fact, no one told me what to expect in terms of the side effects (only that I might have a bit of nausea), or when to expect them to rear their ugly heads. I was able, after one treatment, to predict not only what was coming, but on what day (there were 21-days between my treatments). If I can do this with almost 100% accuracy for all subsequent days between five more treatments, surely someone on the oncology clinical team (fragmented as it is) can predict as well. I still have major resentments toward not being told what to expect, and in the case of chemotherapy, what to do when the side effects surfaced. Blackwell is simply misinformed and has learned little from patients; having little understanding of what patients need and want -- probably because the time is never taken to talk to them about such matters.

I have an equally sore spot for the oncologist not making an immediate consult with a palliative care physician or team at time of the diagnosis. These two specialties should be on the same team; there should be one plan of care developed in consultation between the oncologists and the palliative care providers. Had this happened during the course of my chemotherapy treatments I may not have suffered so much when the side effects appeared. My patient education was reactive, not proactive. Perhaps someday we will figure out how to fuse oncologists, palliative care providers, patients, and patient educators…….not to mention social workers, pharmacists, and other important members who should be on the same team.

Finally, the patient and whomever is identified as the #1 caregiver should be an integral part of the team as well. They experience the full continuum of cancer care, and they are the only ones, if indeed no team discussions occur about the course of ongoing care, then no process improvements in the delivery of care will ever be made. And, most importantly, the patient preference(s) for what kind of care is preferred is an absolute necessity yet is often never asked. Once all the options are explored, it should ultimately be the patient who directs the care. If the Blackwell approach is adopted we will be further away from what needs to happen than we are now."

by: Paul Tatum with David Oliver

Google and Why Modern Medicine is in a Rut

2013-04-25T15:12:00.002-07:00

I'm at the annual SGIM meeting and the following topics came up in conversations w/various folks, so I thought I should write about it.

First, I was struck by a recent news article about Google and how the expectation is that each one of their new products should be 10 times better than the competition. In an interview, Larry Page talked about how setting the bar that high forces everyone to think "outside the box" and come up with new, transformational ideas, rather than tinkering around the edges to make something marginally better.

Second, I was struck by a recent scholarly article by Mittra entitled, "Why Modern Medicine is in a rut" (PMID 19855121) (Props to Dave Aron who suggested the article to me). In it Mittra argues that the first 30 years after WW2 was characterized by transformational change: Dialysis, Ventilators, CABG, etc. However, the last 30 years have been characterized by incremental change despite a huge increase in research funding. He cites 2 reasons: overdependence on high tech research (i.e. Human Genome project) and overdependence on big RCTs (if you need 5000 pts per arm, by definition the effect is modest--truly transformational requires only small studies because the effects are so profound.)

I'd argue that we need more Google-like thinking in research. We shouldn't be investing $200million on a single study to figure out whether triple anti-platelet blockade is better than double blockade. Rather, we should be spending that money to 200 $1M grants to think about revolutionary approaches to atherosclerosis. I don't know what those revolutionary approaches would be, but I am fairly certain that few funded grants are proposing interventions that are 10 times better than current standard of care.

Finally, I was talking to Seth Landefeld, a mentor and disruptive thinker, who talked about how the projects he's most proud of are the ones that were not grant funded. I think this points to the fact that most researchers are drawn to transformative, high-risk projects. The problem is that the vast majority of what is funded is incremental research. So, the safe path is often to do that study on triple blockade rather than transformative research.

Luckily, most of us find some time to do both incremental and (hopefully) transformative research. But if we were able to align funding to reward potentially transformative research, I think we'd get more innovative research, and we'd be able to get Modern Medicine out of Its Rut.

by: Sei

$10,000 Design Challenge to Improve the Communication of End-of-life Preferences

2013-04-22T21:31:00.001-07:00

Do you have any good ideas on how to get more people to complete advance directives early, re-visit them periodically, and for people with serious illness document their end-of-life wishes via forms like POLST? Well, it’s time to turn those ideas into something more.

The California HealthCare Foundation (CHCF) Design Challenge is now in full swing. The goal of the challenge is to "raise awareness of end-of-life care issues and to generate a variety of ideas for compelling experiences that could lead to greater activation and conversation about end-of-life preferences". Anyone in the US is welcome to enter this design challenge, which will award $10,000 in prizes for inspirational solutions.

You can submit pretty much anything you think will get people talking about end-of-life preferences. Your proposed solutions can be something on a website or mobile app, it can be some type of product or object, it can be a marketing campaign, or even an art installation.

It also won’t take a lot to enter. You just need to:

Create a design brief of 500 words or less summarizing your proposed solution
Create a PowerPoint or video (max. 15 min) that visually communicates the proposed solution

Just keep in mind these three main guidelines:

Your submission should promote awareness and create a compelling experience that leads to greater activation and more people communicating their preferences by having a conversation, and completing an advance directive or POLST form.
Your submission should target non-activated people, and help take a person from pre-contemplation to contemplation, or contemplation to action.
Your submissions should not create additional advance care planning documents; existing forms and documents can be used.

Other than that, the challenge is pretty open ended. So get your creative juices flowing and submit something!

For more details, see http://healthcareexperiencedesign.com/eolc/

by: Eric Widera (@ewidera)

5 Misconceptions About Palliative Care

2013-04-22T09:44:00.001-07:00

Richard Besdine, MD medical officer for the American Federation for Aging Research, has a terrific piece in the Huffington Post about palliative care and misconceptions about the field. This is GeriPal to the core. Please follow this link to read the full version.

As a tantalizing preview, here are the 5 misconceptions in brief:

If you accept palliative care, you must stop treatment.
Palliative care is the same as hospice.
Electing palliative care means you are giving up.
Palliative care shortens life expectancy.
There isn't need for palliative care because my doctor will address pain anyway.

Sound familiar?

by: Alex Smith @alexsmithMD

Dr. Lee's Miracle Dementia Regimen

2013-04-17T16:00:00.000-07:00

Evidence is mounting that regular exercise may prevent dementia and reduce the decline in physical function associated with dementia. Dr. Covinsky recently decried the lack of a market for exercise interventions to prevent physical decline for patients with dementia, saying there are no "special interests with the resources needed to fight for their availability."

Our answer is home grown! During a recent Geriatrics Journal Club about the NEJM study on costs of dementia, Dr. Sei Lee realized that what is one man's trash is another man's treasure.

Presenting Dr. Lee's Miracle Dementia Regimen!

The first component is regular exercise, at least 3 times a week. Included in Dr. Lee's regimen are several outstanding DVDs. Here is a free preview:

The second really important part of the program is a miracle tonic (see photo). This tonic should only be taken after regular exercise. The tonic is called obecalp (caution, do not read backwards).

This program will not only be good for you, it is good for society. Reducing the burden of Alzheimer's will save our society billions of dollars.

Act now! Contact Dr. Lee for your special set of DVDs and first shipment of tonic.

by: Alex Smith