GeriPal - Geriatrics and Palliative Care Blog

Tuesday, February 21, 2012

Final Chapter: Californians' Attitudes and Experiences with Death and Dying

A new survey commissioned by the California HealthCare Foundation gives some great insight into the attitudes and experiences that Californians have with death and dying. The survey, conducted by Lake Research Partners and the Coalition for Compassionate Care of California, polled a representative sample of 1669 adult Californians including 393 respondents who lost a loved one in the past 12 months. The results can be summarized as follows:

Californians Want to but Don’t Put their Wishes in Writing

This survey shows that people when asked, actually want to discuss and plan ahead regarding end of life issues.

Approximately 45% state that it is very important to put end of life issues in writing, followed by 37% somewhat important, 12% not to important, 4% Not at all important and 1% refused. However, only 23% have put it into writing, 76% have not and 1% refused.
When asked if a loved one was seriously ill, would you want them to fill out a POLST form so that you would be clear about what he or she wanted 41% definitely, 30% probably, 21% maybe, 2% probably not, 2% definitely not, 1% refused.

Californians Want to But Don’t Discuss their Wishes with Their Doctor

When asked if you were seriously ill, would you like to talk with your MD about your wishes for the medical treatment toward the end of your life: 47% definitely, 32% probably, 16% maybe, 2% probably not, 1% definitely not, 2% refused.
When asked have you ever had your doctor ask you about your wishes for medical treatment at the end of your life 7% yes, 92% no.
When asked more than 4/5 Californians say reimbursing physicians for talking about end of life treatment options is a good idea.
When asked 70% said they want to die at home, when in fact: 32% die at home,42% in the hospital, 18% nursing homes.
The majority of those surveyed, 66% state they want to die a natural death, while only 7% state they would want all possible invasive treatment to attempt to prolong life.

Just checking in what does all of this data actually tell us so far:

Patients, as consumers of health care, as a service based industry, are not receiving what they want.
They would support a system that actually delivered what they wanted by trained professionals with paid reimbursement. This would include discussions regarding end of life care treatment options.

As shown in the article published by Alexi Wright and colleagues, end of life discussions are associated with No increase in patient depression or worry, improved patient and caregiver quality of life, decreased CPR, ICU admissions, earlier hospice referrals, less care giver depression. More aggressive therapies make no difference in mortality and worsen patient quality of life.

In essence we no longer have a choice as ethical health care professionals. Numerous studies and our personal experiences testify to the fact that excellent evidence, based, ethical patient care involves educating patients and their caregivers about what treatment options exist and what the potential outcomes are realistically.

In California not only ethically, but legally pursuant to California assembly bill 2747, effective January 2009, if a physician makes a diagnosis that a patient may have less than one year less to live they are ethically and legally obligated to offer to inform patients of all of their health care treatment options. This includes but is not limited to the right to forgo invasive treatment options and chemotherapy, and to elect symptom and dignity based treatments consistent with palliative based care.

Therefore ethically, legally, practicing evidence based medicine, consistent with our patient’s health care wishes, in concordance with the Patient Self Determination Act, they must be offered an opportunity to be informed of ALL of their treatment options. Our patients want to discuss this with us. Our medical system, Medicare is at a breaking point because as a profession we are not talking and listening to our patients. Therefore, this perpetuated dysfunction through lack of communication leads to patient, family, and health care professional suffering. There is no longer a choice, these discussions must occur! For physicians who are not ready training must take place, if they are unwilling they must offer to refer their patients to someone who is.

We know that the involvement of trained nonphysicians can in fact increase advance directive completion and facilitate them being readily available in the electronic medical record. This model was demonstrated in La Cross Wisconsin with the Lutheran Gunderson Medical Foundation (J Am Geriatr Soc 58:1249-1255, 2010). As this model is adapted and implemented across large health care systems patients’ health care choices are respected. After implementation these preferences were consistent with treatment decisions 99.5% of the time.

This is the end, but also this is just the beginning as we embark on a more humane, patient centered practice of the art and science of medicine.

By: Gideon Sughrue

Forging the Future of Geriatrics and Palliative Care

This month the Journal of the American Geriatrics Society is e-publishing ahead of print a special article you should read, “Report of the Geriatrics – Hospice and Palliative Medicine Work Group: American Geriatrics Society and American Academy of Hospice and Palliative Medicine Leadership Collaboration.”

In 2009, the leadership of the American Academy of Hospice and Palliative Medicine (AAHPM), the American Geriatrics Society (AGS), and the John A. Hartford Foundation brought together leaders in geriatrics and hospice and palliative medicine to identify areas of synergy between the two subspecialties and to work together in areas of common interest. While regular readers of GeriPal should have no problem articulating the overlap between the two specialties, the article nicely summarizes similarities and differences and includes a nice figure adapted from Sean Morrison which will be a great visual resource for presentations (see Figure 1 in the article.)

Focus groups were held in 2009 at the Annual meetings of the AAHPM and AGS and the work group then summarized the key areas of focus in areas of workforce, research, education, policy, and communication to members. Then, at a retreat the leadership of the organizations came to consensus on the following initiatives and recommendations:

Workforce

(1) Continued dialogue between the leadership of both subspecialties on ways to train mid-career providers since fellowship training will not meet workforce needs
(2) Better understanding of the current workforce issues in hospice and palliative medicine and geriatrics through incorporation of questions into the AGS annual workforce study and the proposed academic hospice and palliative medicine survey and communication of these findings to both organizations
(3) Identification of areas of resistance to collaboration between both subspecialties
(4) Delineation of unique and overlapping competencies for both subspecialties
(5) Support by both organizations for Geriatric Academic Career Awards and Palliative Academic Career Awards

Research

(1) Joint advocacy for research in advanced illness / multimorbidity / symptom burden and symptom management in older adults
(2) Increased communication to relevant stakeholders regarding the vacuum in geriatrics / hospice and palliative medicine research
(3) Initiation of a joint strategic initiative to increase funding in these areas through NIH State of the Art conferences, potential Institute of Medicine conferences for targeted topics, and interaction by the workgroup together with other AGS/AAHPM leaders and key research and policy stakeholders

Education

(1) An exhibit booth exchange during both Annual Meetings allowing each organization to have a presence at the other’s national conference
(2) Development of a pre-conference session at both the AGS and AAHPM conferences
(3) Discount offerings of educational materials to memberships (AGS has provided Geriatrics at Your Fingertips to AAHPM members at the AGS member price, and AAHPM has provided the Primer for Palliative Care to AGS members at the AAHPM member price)

Policy

(1) Confer (and hopefully concur!) on matters of mutual clinical and policy import
(2) Share policy and advocacy initiatives regularly to highlight areas of mutual interest and emphasis
(3) Share “talking points” related to (2)
(4) Prepare statements and political approaches to “hot button” issues, including but not limited to rationing, healthcare reform, end-of-life care, Medicare cost-cutting initiatives
(5) Share mechanisms of mobilizing membership to accomplish shared goals of the AAHPM and AGS

Communication to Memberships

(1) Ongoing communication between both organizations’ members and leaders regarding collaboration of the two organizations
(2) Regular updates in the AGS and AAHPM newsletters
(3) Development of a joint position statement and issue brief addressing the need for integration of geriatric and hospice and palliative medicine, the importance of funding the care provided, and the need for training programs that facilitate training at the intersection of the fields

The working group in a letter to the editors of the Journal of Pain and Symptom Management acknowledge that it would be helpful to include other disciplines such as nursing (and I would add the American Medical Directors Association (AMDA!)) but this is a great first step. Be sure to thank both organizations for their work on this, and offer to help out.

And be sure to mark your calendars:

The Geriatrics SIG at AAHPM’s meeting is scheduled to meet Thursday March 8, 2012 from 5:30 PM – 6:30 PM
The Long-Term Care SIG at AAHPM’s meeting is scheduled to meet Friday March 8, 2012 from 4:45 PM – 5:45 PM
The Palliative Care SIG session at AGS’s meeting is scheduled for Thursday May 03, 2012 at 7:30 AM - 9:00 AM

by: Paul Tatum (@doctatum)

Palliative Medicine specialists do much to improve quality of life in persons with serious illness. But ultimately, providing better care to persons with serious illness demands that we improve the Palliative Medicine skills and competencies of those of us not trained in the discipline.

A wonderful review of Palliative Medicine, published as part of the Annals of the Internal Medicine In the Clinic Series nicely meets the grade. The article is directed at practicing physicians with no special expertise in Palliative Medicine. Authors Keith Swetz and Arif Kamal take a pragmatic focus and use clear lucid language.

The section on symptom management was particularly useful. The clear practical guidelines for dosing opiods were very useful. There was also an excellent discussion of management of other distressing symptoms including shortness of breath, nausea, agitation, and delirium.

Other excellent parts of this review were discussions of differences between Palliative Care and Hospice, as well as a discussion of communication, psychosocial, and ethical issues.

This is a great article for primary care physicians who want to upgrade their knowledge of Palliative Medicine, as well as a great article to distribute to medical students and residents.

by Ken Covinsky @geri_doc

Glen Campbell: Still Performing with Alzheimer's

My neighbor told me recently about a musician named Glen Campbell who is still performing despite Alzheimer's dementia. This shows my age, but I had never heard of him.

His story is inspiring for the support he is receiving for continuing to perform while living with early stage dementia. His children are his backup band, and they occasionally have to remind him "we played that one already, Dad."

Mr. Campbell's wife says that a music and performing are therapeutic for him. The new memories don't form well - he has to be reminded that he has Alzheimer's disease - but the songs and guitar skills, honed with decades of performing, are still there. Theresa Allison has written previously on GeriPal about how singing to people with dementia improves quality of life - I'm sure that people with dementia who sing and play music experience similar benefits.

Here's a nice video about the story.

Glen Campbell performed and was honored with a tribute during the Grammy Awards this past weekend.

by: Alex Smith

Notes from the Field: Chiapas Round 2

I am fortunate to be back at the Hospital San Carlos, in Chiapas, Mexico for two weeks. I am again welcomed by the dedicated staff doctors, the St. Vincent de Paul nuns who run the hospital, and other volunteers from around the globe. During my two weeks here, I help staff the outpatient clinic “consulta externa” while helping with complicated inpatient cases, or giving impromptu brief lectures or case reports.

After my first week, I am again reminded of the complexity of providing care in a low-resource and culturally diverse setting. Not surprisingly, there are some parallels to American healthcare, and to my work at Over60, a federally qualified health center, where I must balance current treatment recommendations and diagnostic algorithms with a scarcity of resources, an unequal distribution of wealth, and a cultural milieu which may have different understanding of health and life.

The breadth of illnesses seen is extensive ranging from tropical diseases like Chagas, to foodborne illnesses such as Typhoid fever. With total fertility rates remaining high, it is also not uncommon to see married fourteen year olds coming for their first prenatal visit. As a Geriatrician, I am obligated to either remember something from my Ob-Gyn rotation in medical school ten years ago, or hope that there will be an octogenarian in the waiting room, so that I can graciously forgo this consult, and allow my more knowledgeable colleagues to conduct the prenatal visit!

Ultimately and not surprisingly, the burden of chronic disease is spreading and quickly surpassing infectious diseases as an important public health concern. It is not uncommon to see patients in their 5th or 6th decade of life, presenting to the doctor for the first time with undiagnosed hypertension and diabetes. In some ways, this fact is reminiscent of some of the new patients I see at Over60, in Berkeley, CA. While management guidelines for these illnesses do not differ, there are many more complex sociocultural issues to consider.

Firstly, though I am a native Spanish speaker, I must often use an interpreter as the majority of patients are monolingual Tzeltal, Tzotzil, or Tojolabal speakers. Secondly, the long-term management of these illnesses will be dependent on medication availability and other individual patient factors. Thankfully, due to donations and purchases, the hospital does stock a fair number of medications to treat these chronic conditions. In this way, at the end of each patient consult the patient is able to pick up the prescribed medications from the hospital pharmacy with quantities ranging from a few days to up to 3 months. Yet, because many patients live several hours away, it is not easy for many of them to return for scheduled follow-up or for prescriptions. Many must resort to local pharmacies to purchase prescribed medications, hope they can find the same one, and attempt to gather enough money to make the purchase. Given this context, it is also not uncommon for patients to turn to pharmacy staff (usually doctors employed by the pharmacy) for medication recommendations—presumably creating a conflict of interest—or to curanderos from their own community for more traditional remedies. These facts alone make the management of chronic illnesses all the more difficult. Lastly, it is increasingly difficult to explain the role of long-term medications for chronic disease in the context of a population who is largely of limited-literacy, and is primarily used to the treatment and “cure” of symptomatic infectious illnesses. How do we then, as Geriatricians, explain that many of the afflictions of Aging, are chronic, not curable, and rather solely manegeable?

On this trip, this question has been quite prevalent in my daily patient consultations. I have already seen quite a few older patients and have been contemplating whether the standard Geriatric approach I use with my patients in the US is applicable to the patients who live in rural communities where cultural norms and the role of elders in the community may be different. I’ve wondered whether assistive devices will be as helpful to my patients who live in remote communities with unpaved roads, or in small towns like Altamirano where the streets are cobblestoned and full of potholes, or sidewalks a foot high off the street.

Despite these trepidations, I did decide to give a donated walker to one of my first patients, who claimed to be 100 (but did not know the current year or the year of his birth). I am hoping it will help prevent more falls, given his worsening gait which I presume is due to severe peripheral neuropathy of unknown cause—as I cannot test for B12 deficiency or other etiologies. Yet, I am also wondering if I am being naïve or culturally insensitive not knowing what will actually help this gentleman in his own community. Similarly, as in my prior visit in 2010, I found it interesting that this gentleman not only did not know his birthdate or the current year, but a few other patients where in a similar situation and where not oriented to time. This observation led me to ask a few more patients if they knew the year and their birthdate, and has made me question the validity of applicability of many of the dementia screening tests we are currently using. Given the high rates of low-literacy and illiteracy, I do not think that I could even use the Mini-Cog as an initial pass because of the clock draw component. I have become so accustomed and reliant on the MOCA, but am realizing that this test will not be applicable here.

I have started searching the literature for other screening tools which may be more applicable to this population and which are less educationally biased. The Sweet-16 is probably a screening tool which would be appropriate, but unfortunately, because of its closed-access, I will not be able to use it. I am hoping that other GeriPal readers from our international community may have more experience with dementia screening in rural communities with low literacy rates. Please send in your comments and suggestions!

In the meantime, despite these challenges, the rewards of providing care here are immense, and I can only hope that I am making a tiny dent in the lives of a few patients. By educating one patient, I hope that in turn that new information will be transmitted to another family member, a friend, and ultimately an entire community.

by: Carla Perissinotto MD MHS

To learn more about San Carlos or to make a donation visit: www.hospitalsancarlos.org

Awarding Residents With Interests in Academic Geriatrics

Applications for the second annual Geriatrics Scholarship Award Summit are now open to ACGME interns and residents in Internal Medicine or Family Medicine from across the US. This is an exceptional oppurtunity for interns and residents, so please forward this on!

The goal of the Award is to stimulate interest in a career in academic geriatrics by recognizing residents’ scholarly or research achievements in aging or geriatrics. Each award carries with it a cash prize of $500 plus a stipend to cover travel and lodging in San Francisco to present their work at a special award summit.

Each completed application will be judged based upon:

The quality of applicant/likelihood for success in academic medicine
Demonstration of an interest in geriatric medicine
Quality of research project or scholarly activity

Please note - scholarly projects may include but are not limited to curricular design project; community, clinical or educational program development; quality improvement projects; leadership projects; and public policy projects

The deadline for application materials is April 1st, 2012 and award winners will be announced on April 15th. Awardee's will present their scholarly projects at the June 7th-8th Summit.

More information about the Geriatrics Scholarship Award Summit can be found at UCSF’s Division of Geriatrics Website.

The language of dementia

I didn't know my Grandmother very well as I was growing up. In fact, I'm not sure I even liked her very much when I was younger. I first met my father's mother when my family moved to Taiwan in 1979. I was five and in the middle of kindergarten. My grandparents lived with my uncle, aunt, and 3 cousins in the small apartment above my family's unit in Taipei. My grandparents spoke primarily Taiwanese, a dialect I could barely understand (I was self-congratulatory when I was clever enough to announce to my Dad "It's supper time" in Taiwanese). My parents, siblings and I lived in Taipei for almost 3 years, after which point my mother brought us back to California. My Dad stayed back in Taiwan to work for several more years.

In the end, most of my Dad's family moved to the States, my grandparents with them.
My Grandfather took some English classes which helped us communicate with each other. But my Grandmother remained someone to whom I would sheepishly nod and smile (and then later quietly ask my parents or cousins what she said).

I was not close to my Grandmother at all through most of my adult life. She came from a generation and culture that was foreign to me--one in which women did not work outside of the home. Her life and perspective were focused on women as subservient to men, and daughters and daughters-in-law in service to her. There was a fair amount of intergenerational tension between my mother and my paternal grandmother. I tended to side with my mother. (On hindsight, I realize my Grandmother was simply living and believing tenets in the only way she could, in the way she herself was brought up) I recoiled from her traditionalism and conservatism, especially as I delved further into my own life and profession. During this time, I stayed fairly removed.

But then my Grandmother began to develop dementia. No one in the family quite recognized it at first. But as a geriatrician, I knew that Ahma was not just 'forgetful.' She experienced multiple hospitalizations, all manner of illnesses, and with each one, came home frailer and more forgetful. As I watched her grow thinner, weaker, and more demented, my relationship with her grew deeper. I only saw her every few months, but during my visits, she would never fail to ask me, "Who are you? Ah! Helen. Do you have children? Are you married?" to which I would reply, not yet, Ahma, some day. Three minutes later she'd ask me the same question. And, somehow, even though with my own mother my patience wanes with repeated questions, with my Grandmother I felt it made us closer.

Her dementia progressed. Her husband, my Grandfather, also developed dementia--with a predominance of paranoia and agitation which was so hard for my family. Eventually my parents and uncles and aunts made the difficult decision of placing my grandparents in a nursing home. I know it broke my father's heart as the eldest son who was supposed to care for his parents forever.

In the last 2 years, my Ahma continued to decline. She could no longer walk or feed herself. She still spoke a few words--mostly in Taiwanese which I could barely understand. Most of the time dementia is horrific and traumatizing for stealing the personalities and insights of the people we love. But, oddly, in the case of my Ahma and I, our relationship through the language of dementia grew in ways it never would have if I was still trying to decipher her Taiwanese. I no longer recoiled at any expectations that women serve. Her only expectation in her demented state was kindness, help with her basic activities, responding to a smile with a smile, and holding hands. I got this. I would sit with her and rub her hand, give her a big smile, and tell her again, "Not yet, Ahma, some day."

She died last Thursday. Quickly and suddenly after cracking a small smile and saying my Grandfather's name.

by: Helen Kao

My mother is in her 50’s and currently resides alone. For the past year, she’s depended largely on the Internet to stave off loneliness by visiting entertainment websites and communicating with her busy children via e-mail.

But, while visiting an online foreign newspaper, her computer contracted a virus that blacked out her desktop and rendered her computer inoperable. Suddenly, her life line had been cut off and for weeks she wallowed in isolation and despair. Sounds melodramatic, but for many socially isolated older adults, having that virtual life line that connects them to the World Wide Web has become vital to their psychological and emotional well-being.

Lately, there have been a plethora of international news regarding elders and the use of technology in mitigating the effects of loneliness and isolation. In Israel, a Virtual Day Care Center program was developed to enable homebound elders to have social interactions via Skype, a popular voice-over-Internet Protocol service (VoIP).

South Australian elders are offered a similar program by Helping Hand Aged Care and Telstra, which work to train participants on the basics of safe and fun Internet use for connecting with family and friends.

And, taking it a step further, in Thailand, plans are unfolding for introducing robotic health-care assistants into the homes and lives of the disabled and elderly. These machines are programmed to be interactive with voice recognition hardware.

Although these services sound helpful in a changing cultural milieu where technology is purportedly making life easier and more efficient for all, I wonder if this current trend in using technology to mitigate the burdens of social isolation in elders will hold up. Some issues come to mind - poor elders will likely have less access to these “life-improving” devices and those who are keen on maintaining strictly human interactions will shun such services.

Moreover, are we as a society becoming too dependent on using technology to solve our problems? When I had a conversation with my brother about how we could carve out time in our schedules to visit our mother more often now that she was feeling lonely and disconnected with her computer still down, he responded, “Let’s just get her an iPad.”

Though technology is not a quick fix for social isolation, it could be the next best option, considering our growing aging population and lack of familial support at home. Maybe this is the best we can do, especially in places that, unlike China, lack the cultural and social infrastructure to effectively impose laws that make it illegal to neglect our elders (read previous post on "China Making it Illegal Not to Care").

Maybe it’s not so much a life line, but a life web that technology has created to serve as a system of far-reaching, interconnecting support for elders who feel isolated. But, is this web actually helping to integrate elders who fall through the social cracks or to further isolate them as they converse with friends and family remotely through technological devices and possibly interact with robots instead of a live human being?

By: Julie N. Thai [GeriPal International Correspondent]

Potpourri from Clinical Work VI

Palliative care fellow Katherine Aragon (right) and intern Sara Murray displaying their lightweight portable chairs (they have a shoulder strap as well)

Just finished another couple of weeks attending on the palliative care service, and wanted to share a couple of thoughts with GeriPal readers.

Heeding the advice of Ken Covinsky to SIT DOWN! We purchased a couple of portable chairs for our palliative care team. As a rule, we generally try and sit with patients. However, we've noticed that we've been standing a great deal recently. We realized this is because our hospital is "chair-penic" (the state of having lower than normal amount of chairs). It's become too much of a hassle to track down chairs for the entire team. Consequently, we all ended up standing. Not anymore! Yesterday, we proudly slung our portable chairs over our shoulders and stormed the hospital. We were immediately noticed by the ward attendings, who said: "what is that?" "how does it work?" and "is that a palliative care device?" I'm happy to report that the stools have led to more seated conversations with patients, without substantial compromise in comfort for short visits. I don't know how they would fare in a long family meeting - I think the longest we used them was about 1/2 hour. My wife and members of the team were seriously concerned about the "dork factor" of carrying around portable stools. As you can see from the picture, these portable stools are small and fashionable, and all concerns about sensibility were quickly set aside.
Was anyone else taught that for neuropathic pain you needed to titrate the dose of gabapentin to 900mg TID before seeing a significant reduction in pain? I've always wondered if this "pearl" is data driven, or a rumor started by big pharma (Pfizer did some pretty disgusting things - see Kens' comments in this link). Even looking at this review article, where the second author worked for Pfizer, there seems to be evidence of efficacy of gabapentin at doses of only 300mg TID. Clinically, once I start pushing beyond that I've found many patients can't tolerate the side effects - somnolence and confusion in particular.

Eric Widera sitting on a portable chair, fellow Katherine Aragon sitting in a chair for comparison

by: Alex Smith

The Aging Homeless: Geriatrics on the Streets

The demographic picture of the homeless has shifted markedly over the last 20 years, with a marked increase in the average age of homeless persons. Currently, nearly 1/3 of the homeless are over the age 0f 50.

A remarkable study paints a concerning portrait of the struggles faced by the aging homeless. It was led by Geriatrician Rebecca Brown who conducted the study while a Geriatrics Fellow at Harvard Medical School. Dr. Brown is currently our colleague in the UCSF Geriatrics Division. The senior author was Harvard Senior Life Geriatrician, Dr. Susan Mitchell. The study was published in the Journal Of General Internal Medicine.

This study examined prevalence of Geriatric Syndromes in the homeless elders. Geriatrics syndromes are problems affecting daily functioning and independence that typically occur in seniors. This includes basic activities of daily living like the ability to get dressed and cognitive functioning. The study showed strikingly high rates of "Geriatric problems" in persons much younger than typical Geriatric patients.

Brown interviewed 247 homeless adults age 50-69 (average =56) at 8 homeless shelters in Boston. Many had been homeless for a long time, on average more than 7 years. In an excellent accompanying editorial, Dr. Margot Kushel notes that when persons become homeless at older ages, they are much more likely to become chronically homeless. The portrait of health and functioning is striking:

30% had difficulty performing basic activities of daily living (such as bathing, dressing, getting out of a chair)
57% had difficulty with instrumental activities of daily living (such as handling money, managing medicines, accessing transportation)
53% fell during the past year
28% had impaired cognitive functioning
40% had significant depression
50% had urinary incontinence

To get a sense of how bad these levels of impairment are, Brown compared the prevalence of these problems to a typical group of older persons with an average age of 78. The comparison is remarkable because it showed that older homeless have considerably greater difficulty with functional status than persons more than 20 years older.

Life on the street is hard enough, but older homeless are facing homeless with markedly diminished functional capacity.

In her editorial, Dr. Kushel notes the value of supportive housing in helping care for the aging homeless. Many of the aging homeless, will need nursing home care as their functioning further deteriorates. Kushel emphasizes that if the social and moral imperative is not motivation enough, the rapidly escalating pubic costs of their long term care should provide a powerful economic motivation to address the needs of the aging homeless.

By: Ken Covinsky

The Dangers of Rote Medicine

***Warning: the below blog includes the direct Emergency Room documentation of an attempt to resuscitate a patient who died***

I understand the value that routine and standard procedure can have in medicine. For example, Quality and Safety endeavors often turn to checklists and protocols to ensure that patients receive a standard of care and that errors are not made. The same goes for the way providers document in medical records. We often follow a set format, such as SOAP for Subjective-0bjective-Assessment-Plan with progress notes. But a recent experience reading the account of how one of our Housecalls patients died left me wondering if compassion and reflection have been squeezed out by rote medicine.

We recently enrolled a 97yo woman with dementia into our Housecall program. This woman had no surrogate decision maker although she had a devoted caregiver and community case manager. Conservatorship application was submitted but had not materialized and because her goals of care had not been clearly identified, there was no pre-hospital DNR or POLST form in her apartment.

She became acutely ill one day and her caregiver called 911. She was brought to the local hospital and, understandably because she had no DNR, subsequently underwent CPR and intubation. Not surprisingly, she died despite the attempt.

The code was documented as follows (bolding by myself):
"She went from bradycardic to asystolic, code was called. While she was being ventilated by bag valve mask, she was moved to the code room and was immediately intubated. The vocal cords were visualized using a MAC 3 blade and a 7.5 ET tube was passed through the cords under direct visualization by myself. There were no complications related to the procedure. She tolerated the procedure well. She was hooked to a monitor as this was being done and noted to be asystolic. She was given 3 rounds of epinephrine and atropine with internal checking of pulse in between each dose of medication. There was never any return of spontaneous circulation with the medications, and after a period of time she maintained asystolic. . . given attempts, given her age, given the lack of response to interventions, the code was subsequently called at xx:xx"

Is it just me or do others wonder at the insensitivity and rote-ness of writing "she tolerated the procedure well" when, in all likelihood, this woman was dying or dead when intubated??

by: Helen Kao

GOP Candidates on Advance Directives

We have learned a lot of lessons in Hospice and Palliative Care about how political discourse can impact our field and the care we give to individuals with serious illnesses. You only have to go back to January of 2011 to see how the hysteria around death panels led to the removal of legislation that would have reimbursed physicians for advance care planning discussions.

As the GOP primaries continue to heat up, it will be important for us as a field to continue to pay attention to the rhetoric used on the campaign trail and discussed on nationally telavised debates. One interesting yet brief exchange took place between in Tampa, Florida on January 23, 2012 between Newt Gingrich, Ron Paul, Rick Santorum, and Adam Smith of The Tampa Bay Times. This transcript was provided by the Chicago Tribune (and a big thank you to the reader who emailed me this exchange):

SMITH: Thank you. Senator Santorum, in 2005, Florida was in the middle of a huge national debate over Terri Schiavo, whether her feeding tube should be removed after the courts had ruled that she had been in a vegetative state for years. You were at the center, at the front of advocating congressional intervention to keep her alive. You even came down here, came to her bedside after a fund-raiser. Why should the government have more say in medical decisions like that than a spouse?

SANTORUM: Well, number one, I didn't come to her bedside, but I did come down to Tampa. I was scheduled to come down anyway for that event, and it so happened that this situation was going on. I did not call for congressional intervention. I called for a judicial hearing by an impartial judge at the federal level to review a case in which you had parents and a spouse on different sides of the issue. And these were constituents of mine. The parents happen to live in Pennsylvania, and they came to me and made a very strong case that they would like to see some other pair of eyes, judicial eyes, look at it. And I agreed to advocate for those constituents because I believe that we should give respect and dignity for all human life, irrespective of their condition. And if there was someone there that wanted to provide and take care of them, and they were willing to do so, I wanted to make sure that the judicial proceedings worked properly. And that's what I did, and I would do it again. (APPLAUSE)

SMITH: Do not resuscitate directives, do you think they're immoral?

SANTORUM: No, I don't believe they're immoral. I mean, I think that's a decision that people should be able to make, and I have supported legislation in the past for them to make it.

SMITH: Speaker Gingrich, in that case the courts had ruled repeatedly. How does that square, the Terri Schiavo, action with your understanding of the Constitution and separation of powers?

GINGRICH: Well, look, I think that we go to extraordinary lengths, for example, for people who are on murderers row. They have extraordinary rights of appeal. And you have here somebody who was in a coma, who had, on the one hand, her husband saying let her die and her parents saying let her live. Now, it strikes me that having a bias in favor of life, and at least going to a federal hearing, which would be automatic if it was a criminal on death row, that it's not too much to say in some circumstances your rights as an American citizen ought to be respected. And there ought to be at least a judicial review of whether or not in that circumstance you should be allowed to die, which has nothing to do with whether or not you as a citizen have a right to have your own end-of-life prescription which is totally appropriate for you to do as a matter of your values in consultation with your doctor.

SMITH: Congressman Paul, you're a doctor. What was your view of the Terri Schiavo case?

PAUL: I find it so unfortunate, so unusual, too. That situation doesn't come up very often. It should teach us all a lesson to have living wills or a good conversation with a spouse. I would want my spouse to make the decision. And -- but it`s better to have a living will. But I don't like going up the ladder. You know, we go to the federal courts, and the Congress, and on up. Yes, difficult decisions. Will it be perfect for everybody? No. But I would have preferred to see the decision made at the state level. But I've been involved in medicine with things similar, but not quite as difficult as this. But usually, we deferred to the family. And it wasn't made a big issue like this was. This was way out of proportion to what happens more routinely. But I think it should urge us all to try to plan for this and make sure either that one individual that's closest to you makes the decision or you sign a living will. And this would have solved the whole problem.

So what do you make out of this? Are you encouraged that the candidates have at least some healthy respect for Advance Directives and the right not to have CPR performed upon them? Are you dismayed by some of the statements about judicial review for end of life decisions?

I for one am hopeful as the language used in this debate is very different than the language used during the debates about health care reform (in particular the provision to pay for advance care planning consultations). I also can't help but to see the connection between this debate and something Diane Meier said in 2009 during a panel discussion with the Health Affairs Journal:

despite the current controversy over the advance care planning consultation provision, the ongoing debate “will turn out to be positive, as the Terry Schiavo debacle turned out to be positive. … We’ve begun to turn the tide on the lies about death panels. That’s all they are – lies – and we need to keep saying that.” Yes, we may have lost the battle in regards to the Advance Care Planning Consultation proposal, but the war is far from over.

by: Eric Widera

The MMSE Saga: An Assault of the Values of the Academic Profession

The MMSE saga has attracted great attention here on GeriPal and elsewhere since the breakthrough NEJM article of Newman and Feldman.

As readers Eric Widera's previous posts (here and here) know, the MMSE was one of the most widely used tests in medicine. It was a brief, easy to use screen to identify older persons with cognitive impairment. A generation of students learned to assess using cognitive function with the MMSE, and the MMSE was reproduced in textbooks worldwide.

But after allowing widespread use of the MMSE for decades, the developers enforced their copyright. The MMSE disappeared. A tool that was used to improve the care of older patients became unavailable. Medical progress went into reverse. Patient care suffered. We directly saw this negative impact on patient care at our VA hospital. The MMSE, which was available to all clinicians via our electronic medical record, disappeared. It became much much harder to offer cognitive testing to our patients.

Even worse, when a group of investigators at Harvard developed the Sweet16, an alternative to the MMSE that was easier to use and equally accurate, and offered it to the public free of charge, the enforcers of the MMSE copyright blocked access to the Sweet16. Again, medical progress was halted, and our patients were harmed.

Much of the discussion about the MMSE has focused on the legal rights of the MMSE developers and PAR, the company enforcing the copyright. Some blogs by legal scholars have suggested the copyright claims may not be solid, and the legal justication for squelching the Sweet16 may be questionable. For example, as Eric notes, virtually all the items in the MMSE were available long before the development of the MMSE.

But what if the MMSE copyright claims and the squelching of the Sweet16 are legally sound? What if every action was justifiable under copyright law? Should this impact how we judge the actions taken in this case?

Just because an act is legally defensible does not make it ethically or morally defensible. And the actions taken here are an affront to the values that guide medicine and scientific research.

Academic physicians have a particular obligation to advance and improve the practice of medicine. Most certainly, we have an obligation to not take any actions that will move the practice of medicine in a backward direction and be harmful to our patients.

The fame and accolades the developers of the MMSE accrued were well earned because this test proved to be a major advance in the practice of medicine. It brought accessible bedside methods of cognitive assessment to scores of clinicians. This greatly improved patient care. But the act of purging the MMSE from textbooks and websites harmed the practice of medicine, and did so in a way that is harmful to patients.

It may well be true from a legal perspective that there is a right to enforce a copyright on a clinical instrument after allowing the instrument to be used in clinical practice for decades. Perhaps from the point of view of copyright law, it is completely irrelevant whether one allows and encourages a tool to enter clinical practice.

But as academic researchers with responsibilities to improve care, it is hard to imagine an ethical justification for this action. Of note, one of the MMSE developers was chairman of a major academic department of psychiatry until 2003. Irrespective of the legal rights, this high position should confer an obligation to not take an act that would set back the practice of psychiatry.

The withdrawal of the MMSE from public access was bad enough. But the takedown of the Sweet 16 was really bad. A core ethic of medical research is the recognition that one's work falls into a larger mission: It is part of an ongoing effort by a community of researchers to continuously improve patient care. It does stand alone.

We should except that other researchers will follow us--questioning our work, and trying to make our work better. The MMSE authors should have expected and hoped that over time other researchers would further test their tool and try to improve it. Fong and colleagues were acting in the best scientific traditions when they tried to do this with the Sweet 16. To try to prohibit others from improving a test instrument seems analogous to a drug maker prohibiting others from modifying a chemical compound to a derivative that better improves health.

The MMSE presents fascinating legal issues. But the right action here does not really rest on a legal analysis. I hope the MMSE authors reconsider their approach, return the MMSE to public access, and withdraw from all attempts to block access to the Sweet 16.

by ken covinsky (@geri_doc)

The Third Annual Hastings Center Cunniff-Dixon Physician Award

The 2012 recipients of the third annual Hastings Center Cunniff-Dixon Physician Awards were just recently announced. I was honored to be one of the recipients of this award last year, but am humbled by this year’s awardees. Richard Payne said it best in the Hastings Center press release: "This year's winners emerged from an exceptionally strong field of nominees and serve as models of competent, caring, compassionate doctoring."

The awardees for the 2012 year are:

Senior Physician Award:

Janet Bull, MD. Janet is the chief medical director and principal investigator of Four Seasons, a nonprofit hospice and palliative care organization in North Carolina. She is a role model for many palliative care clinicians thanks to her work that combines both clinical practice, research, and local and national leadership in hospice and palliative care.

Mid-Career Award:

Michael Rabow, MD. Mike is a professor of clinical medicine at the University of California San Francisco (UCSF). In addition to being one of the nicest palliative care doctors I have ever met, Mike is one of the true visionaries in palliative care. Among his numerous accomplishments, Mike developed one of the first outpatient palliative care clinics in the US, the Symptom Management Service at UCSF Hellen Diller Family Comprehensive Cancer Care Center.

Early-career Awards:

Justin N. Baker, MD. Justin directs the Division of Palliative and End-of-Life Care and the Hematology/Oncology Fellowship Program at St. Jude Children's Research Hospital. He was recognized for his outstanding leadership and research in pediatric palliative care.

Jason Morrow, MD, PhD. Jason is the Medical Director of inpatient palliative care at the University of Texas Health Science Center at San Antonio. Jason was recognized “for his advocacy in expanding palliative care services and his passion for educating medical students, residents, and other physicians in clinical practices and ethics.”

Theresa A. Soriano, MD, MPH. Theresa runs the Mount Sinai Visiting Doctors Program at Mount Sinai School of Medicine in New York. She is being recognized in part for her advocacy and leadership in caring for underserved patients and bringing primary and palliative care to those who are homebound.

A very big congratulations to all the awardees. Thank you for all your hard work.

by: Eric Widera

Eprognosis gets Half a Million Hits in the First Week

Eprognosis is barely a week old, and we've already had over 500,000 pageviews (150,000 unique visitors). For perspective, GeriPal is about 3 years old, and in that time we've had 400,000 pageviews. We've had loads of press, including 6 stories in the New York Times about prognosis and eprognosis (Stories by Paula Span here, here, here, here, and here. Story by Pauline Chen in today's paper here. For a more complete list of media stories, see the eprognosis "About" page here. Unexpectedly, about a quarter of our hits have come from Turkey, due to this news story.)

All this attention prompted my six year old son to say, wistfully, "I remember before daddy was famous" -- as if our lives have changed dramatically, and the paparazzi are chasing us down!

But seriously...what does all this mean?

The central objectives of our scholarly work on this topic were to: (1) promote consideration of prognosis in clinical decision making for older adults - because it leads to better clinical decisions and most older adults want to know; (2) promote patient-physician discussion of prognosis (3) evaluate the quality of prognostic tools for clinicians; and (4) make these tools available to clinicians.

Something happened along the way. Eprognosis was designed for clinicians, and yet before we launched, we decided to allow the public access to the site. We've been thoughtfully criticized for this decision. The matriarch of my family, who is nearly 100 and enrolled in hospice, cautioned (via email!) that "numbers don't tell the whole story." She and others have expressed concern that clinicians and the public may get the impression from eprognosis that a calculator can somehow solve the complexities of prognosis, and skip over the delicate work of prognosis communication. See also this thoughtful post from Carol Levine, who wrote:

The primary reason that patients are referred to hospice so late is not that doctors don’t know the patient is dying but that they are reluctant to discuss the option. For now, my suggestion is that ePrognosis is best used with a warning: “Do not try this at home. If you do and experience severe anxiety or contemplate drastic life changes, consult your physician right away.”

We were deeply ambivalent about the decision to allow non-clinicians access to the site. On the one hand, we worried that the average lay person doesn't have the medical sophistication to gauge the applicability of an index to their clinical situation, much less correctly input the variables and interpret the statistical results. On the other hand, culture change around these discussions is not likely to occur if we focus solely on motivating clinicians to talk with patients about prognosis. We believed that we'd have far greater potential for promoting a national (or international) conversation about this topic if we opened the site to patients and caregivers, encouraging them to discuss the information with their clinician.

What do you think? Should we have opened eprognosis up to the general public? Should we require clinicians to log-in and provide evidence of their clinical credentials to access the site (if this is possible)? Or should we push forward, helping lay users access and interpret the information, activating patients and caregivers to have informed discussions with their clinicians?

by: Alex Smith

Prognostic Indices In Patient Care: Useful or Waste of Time?

Many clinical decisions in older persons are dependent on life expectancy. For example, as life expectancy declines, cancer screening is likely to do more harm than good. Also, persons who have limited life expectancy may want to plan, discuss their values, and consider palliative care approaches of care in addition to care focused on living as long as possible.

But can one actually predict life expectancy accurately in an individual patient? In an oustanding review of prognostic indices to predict life expectancy in older persons just published in JAMA, Dr. Lindsey Yourman suggests the glass may be more then half empty. Dr. Yourman is an internal medicine resident at Scripps Mercy Hospital in San Diego. Other authors include Alex Smith (senior author), Sei Lee, and Eric Widera of UCSF and Mara Schonberg of Beth Israel Hospital.

So what are the problems with prognostic indices? Well first, at least when applied to an individuals, they are of limited accuracy. For example, lets say you apply a prognostic index to 2 patients. If the index were perfect, it would always assign a lower life expectancy to the patient who dies first. However, Yourman found the best indices identified the patient who dies first no more than 85% of the time. Many indices identify the right patient less than 70% of the time. When you consider that flipping a coin will be correct 50% of the time, this does not sound so great.

But it is even worse than that. The accuracy of prognostic indices is often tested under ideal and controlled conditions. When you see a research report of a prognostic index, you see how well it did in a group of patients specified by the researchers. But how accurate will the index be in your patient? Invariably, the answer is less accurate. This is because your patients are never quite the same as the patients in the research study. Further, you will probably measure the risk elements in a somewhat different way than the researchers.

The answer to this seems simple enough. If we want to know the accuracy of the prognostic index, it should be tested by a new group of investigators in completely new patients. But as Yourman reports, this is almost never done.

So, does this mean we should do away with prognostic indices? No. It just means we should use them intelligently. Prognostic indices are ultimately not that different from any other clinical tool or diagnostic test. Just like you should never look at a test result in isolation, you should never look at a prognostic estimate in isolation. You think about the extent to which it is likely to apply to the patient right in front of you. You think about whether there are characteristics of your patient that were not considered in the prognostic index. And you use it as an additional tool in decision making--integrating the information with knowledge about the patient's clinical circumstances, and their values and care preferences.

As an additional source of information, prognostic indices can be quite valuable, if used to supplement clinical judgement. But clinicians who use them in isolation, to supplant clinical judgement are probably better served by avoiding prognostic indices.

Clinicians (and patients too) now have easy access to these prognostic indices. The authors of the JAMA article have developed a website, ePrognosis, that has converted all the indices reviewed in the article to easy calculators. It is a great tool, that will improve access to prognostic information. But perhaps the danger of ePrognosis is that it is too easy. In a matter of minutes, you can input a few elements of patient data and the calculator will spit out a probability of survival.

Using ePrognosis intelligently will take much more work. Whether that number is actually accurate for your patient, and how you should apply it to their care is as much medical art as science.

by: Ken Covinsky

Copyright and Access to Taxpayer Funded Research

This is the third post in a series on copyright in medicine. We started off the series with two posts. The first discussed the importance of a NEJM article advocating for the greater use of copyleft licenses in medicine. The second detailed the dubious copyright infringement claims by the authors and owners of the mini-mental state exam. This last post in the series is a call for help maintain a bare minimum of open access to taxpayer funded research.

A new Association of American Publishers (AAP) backed bill titled the “Research Works Act” is threatening the currnet National Institutes of Health (NIH) public access policy. The current NIH policy requires that all final peer-reviewed journal manuscripts that arise from NIH funds be submitted to PubMed Central upon acceptance for publication, and that these papers are accessible to the public on PubMed Central no later than 12 months after publication.

Despite an overly restrictive period of up to 12 months before making these works open to the public, Representatives Carolyn Maloney (D-NY) and Darrell Issa (R-CA) have decided to move forward with a bill that would effectively end open access to work funded by the federal government. The language of the bill is simple in its destructive power:

"No Federal agency may adopt, implement, maintain, continue, or otherwise engage in any policy, program, or other activity that:

(1) causes, permits, or authorizes network dissemination of any private-sector research work without the prior consent of the publisher of such work;

or   (2) requires that any actual or prospective author, or the employer of such an actual or prospective author, assent to network dissemination of a private-sector research work (i.e any non-governmental agency like a university).

Many journalists and bloggers have been up in arms over this issue. Major outlets including Scientific American, WIRED, and the Atlantic, have had articles lambasting the bill. So, what can be done? Michael Eisen from UC Berekely said the following in his blog post:

“It is inexcusable that a simple idea – that no American should be denied access to biomedical research their tax dollars paid to produce – could be scuttled by a greedy publisher who bought access to a member of Congress.” [Referring to political contributions that Dutch publisher Elsevier made to Rep Maloney]

He goes on to urge his readers to:

“call/write/email/tweet Representative Maloney today, and tell her you support taxpayer access to biomedical research results. Ask her why she wants cancer patients to pay Elsevier $25 to access articles they’ve already paid for. And demand that she withdraw H.R. 3699."

By far the easiest thing anyone reading this post can do is to start off by tweeting Rep Maloney at either @RepMaloney or @CarolynBMaloney. I would also strongly encourage you to tweet Rep Issa at @darrellissa, as he proudly proclaims himself to be for "an #OPEN, accessible & uncensored internet" (makes you wonder why he proposes cutting off open access to journal articles).

Deevy Bishop, from BishopBlog, takes it one step further with a call to arms for her academic colleagues:

“We provide the articles for Elsevier journals, and we do a lot of unpaid work reviewing and editing for them. None of us wants to restrict our opportunities for publishing, but these days there are a lot of outlets available. When deciding where to submit a paper, I suspect that most academics, like me, take little notice of who the publisher of a journal is. I focus more on whether the journal has a good editor, my prior experience of publication lags, and whether Open Access is available. But as from now, I shall include publisher in the criteria I adopt, and avoid Elsevier as far as I can. Also, if asked to review for a journal, I’ll check if it is in the Elsevier stable, using this handy website, and if so, I’ll explain why I’m not prepared to review. I suggest that if you are as annoyed as I am by this story, you do likewise, and refuse to engage with Elsevier journals.”

I probably wouldn't go as far as Deevy Bishop and I don't think it is fair to single out Elsevier, but it does make me think of all the free labor that I willing give to these journals. A similar option is to take a "don't peer-review articles from non-open access journals" approach as seen in this letter by Michael Ashburner posted on Casey Bergman’s blog.

Lastly, you can make your voice heard also to the the National Science and Technology Council's Task Force on Public Access to Scholarly Publications. There is a Request for Information (RFI) on the Federal Register's website that closes on January 12 (ignore the date on the website, the deadline was extended). This is not part of the bill, but it is another way to get your voice heard.

If you don’t know what to say for the RFI or in the letters to your representative, look at this link from the Provost of Harvard University, Alan M. Garber. Alternatively, you can also just ask for the bare minimum of open access protect as suggested by Stevan Harnad:

(i) the fundee’s revised, accepted refereed final draft

(ii) of all refereed journal articles (including refereed conference articles) resulting from the funded research must be

(iii) deposited immediately upon acceptance for publication

(iv) in the fundee’s institutional repository.

(v) Access to the deposit must be made gratis OA (online access free for all) immediately (no OA embargo) wherever possible (over 60 % of journals already endorse immediate gratis OA self-archiving).

By Eric Widera (@ewidera)

Addendum: for an excellent round-up of blog posts on this subject go to John Dupuis' blog.

Should for-profit hospices be banned? Or are they victims of a witch hunt?

10 year stock price of Gentiva, the nation's fastest growing for-profit hospice provider

For-profit hospice has been in the news recently, and the press has not been favorable. We have this from a recent lengthy article in the Washington Post:

"Hospice care, once chiefly a charitable cause, has become a growth industry, with $14 billion in revenue, 1,800 for-profit providers and a base of Medicare-covered patients that doubled to 1.1 million from 2000 to 2009. Compensation based on enrollment numbers, pay to nursing-home doctors who double as hospice medical directors, and gifts to the nursing facilities have helped fuel the boom, according to a study of 1,000 pages of court documents and interviews with more than 45 hospice employees, patients and family members."

And from Wednesday's Kaiser Health News, we have:

"A national hospice company improperly cycled patients through nursing homes and hospice with a goal of making as much profit as possible from Medicare, according to a whistleblower lawsuit announced this week."

All of this press on the heels of a terrific JAMA article by Melissa Wachterman and Ellen McCarthy at Beth Israel Deaconess Medical center that described differences between for-profit and nonprofit hospices. Seven percent of patients in for-profit hospices had lengths of stay of greater than one year, compared to three percent in nonprofit. For-profit hospices enrolled nearly twice as many patients with dementia - patients with lower skilled needs and longer lengths of stay.

St. Christopher's Hospice, a nonprofit hospice established
by Cicely Saunders in 1967

And yet, for-profit hospices probably do some things that nonprofits don't do well. The flip side of the above findings is that for-profit hospices are terrific at enrolling patients with advanced dementia, a terminal disease needing palliative care. For-profits tend to be larger, and because of the economies of scale associated with size, they're able to provide more "open access" care to patients who are not yet ready to transition to an exclusively palliative approach. The argument can be made that most patients do not enroll in hospice long enough to realize the benefits. With this phenomena in mind, longer lengths of stay are a good thing - to a point - but where is that point? This is a central issue at stake.

What to make of all this? Is it possible to align the goals of outstanding end-of-life care with a for-profit model? Is it ethical?

One argument is to allow for-profit hospices to continue, but place better safeguards and do a better job of rooting out fraud and abuse. Another argument could be made for banning for-profit hospices.

As a community, we have a lot skin in the game. Many of AAHPM's members and leaders work for for-profit hospices, including the current president, the medical director of Gentiva, the nation's fastest growing for-profit hospice provider. Many others work for Vitas. Amusingly, Vitas, the nation's largest provider of care to the terminally ill, is owned by Chemed Corporation, whose other holding is roto-rooter, the nation's largest plumbing and drain-cleaning provider.

As these arguments play out in the press, congress, and the courts, we should try to sharpen our message as a community about the role of profit in the hospice industry. The risks of not thinking this through and letting others craft the message are too great.

by: Alex Smith

MMSE and Copyrights Part II: Is the MMSE Derivative of Some Other Work?

A couple of days ago we covered Dr. John Newman's NEJM perspectives piece that focused attention on how a company, PAR, is trying to charge clinicians everytime they use the MMSE in clinical practice. To make matters worse, PAR is also trying to take down other tests, like the Sweet 16, that are thought to be derivative of the MMSE. As upsetting as this is, it does beg the question of how the originators of the MMSE, Marshal and Susan Folstein, came up with their test, and whether it is derivative of any other previous cognitive screens.

The origin of the MMSE, as claimed by the Folsteins and PAR, is as follows (taken from the PAR blog):

"We developed the MMSE to solve a clinical problem on a geriatric psychiatric inpatient service. The diagnoses of patients on our unit included depression, dementia, delirium, and occasional late-life schizophrenia. We needed a practical quantitative cognitive exam in order to aide clinicians in determining the severity of cognitive impairment ranging from mild to severe and to document improvement or decline.

At the time, Susan was a psychiatry resident rotating on the geriatric psychiatric unit where I (Marshal) was a junior attending. Always a perfectionist, she was not happy when I repeatedly asked for cognitive information that she had not asked about. So she asked me to write down all the items that I wanted her to include."

So how did Dr. Folstein come up with these questions? Did he think up these questions without any knowledge of previous short cognitive screens or were they derivative of some other work? Although I can’t go back into Dr. Folstein’s brain and answer that question, I can try to answer the following questions that may shed some light on the topic.

1. Was the MMSE the first to create a short cognitive test?

In a previous interview, the Folsteins' colleague, Dr. Paul McHugh, recalls the origin of the MMSE:

“We were just kids; we didn’t have any training. We just needed it to do our work everyday… And once we had it, it became obvious that nobody else had anything else like it.”

Well that’s not technically true. Four years before McHugh and the Folsteins first published their work on the MMSE, Eileen Withers and John Hinton published a paper in the British Journal of Psychiatry documenting no less than 3 other short cognitive tests (a big thanks for Deevy Bishop from BishopBlog for the citation). These tests were described as clinical tests of the sensorium (CTS) and comprised some of the “most of the commonly used tests” used by clinicians (and yes that is a quote from 4 years prior to the introduction of the MMSE).

Some of the questions used by Withers and Hinton look an awful lot like the MMSE questions. They include questions on orientation to time and place, registration and recall, attention and calculation (serial 7’s), and repeating a sentence. Sound familiar PAR?

2. Was the MMSE the first cognitive test to use orientation questions (i.e. what year is it)?

This is a pretty definitive no. In addition to the 1971 article cited above, there are lots of examples of tests that include questions on orientation to time and place as the MMSE does. For instance, in a 1945 manuscipt by David Wechsler describing his Wechsler memory scale. Attached is a modified version of the Wechsler scale that clearly shows similarities to the MMSE questions.

3. Was the MMSE the first cognitive test to use brief registration and recall questions?

This is clearly not the case. You can look back to a 1943 manuscript from the Proceedings of the Royal Society of Medicine to see that these types of memory tests are “by no means novel”:

“The use of simple memory tests in psychiatric assessment is by no means novel... Tests requiring recall of a small number of unrelated items after a slightly longer interval, as a rule five or ten minutes. An example is the so-called "Name, Address and Flower" test."

4. What about serial 7’s (counting down from 100 by 7)?

Serial 7's is another part of the MMSE that tests attention and calculation. Serial 7's were used long before the MMSE though. John Hinton and Eileen Withers best describe the history of serial 7’s in their 1971 manscipt “The Usefulness of the Clinical Tests of the Sensorium” published in the British Journal of Psychiatry:

"Continuous addition and subtraction tests have been used for years by clinicians, including Kraepelin… Ruesch (1944) found the Serial Sevens test was a useful pointer in patients who suffered a head injury; the test results related to the extent of coma, confusion and intellectual impairment.”

5. Was the MMSE the first cognitive test to include repetition of a sentence?

Hmmm. I wonder where Folstein got the idea to add a sentence that the patient is supposed to repeat verbatim? Well, you can easily date back repetition of a sentence to as early as 1930. In her 1930 paper titled “An experiment in the measurement of mental deterioration in the Archives of Psychology”, Harriet Babcock described a sentence repetition test. The sentence reads: "One thing a nation must have to become rich and great is a large secure supply of wood." This sentence is supposed to be repeated alternately by the examiner and the patient until the latter gives the correct sentence.

6. Surely something needs to be novel in the MMSE? What about the overlapping polygons?

No again. The double-pentagon copy is a variation of the much older Bender-Gestalt Figures, as acknowledged by the Folsteins' 1975 paper:

“The second part tests ability to name, follow verbal and written commands, write a sentence spontaneously, and copy a complex polygon similar to a Bender-Gestalt Figure; the maximum score is nine.”

Summing it Up

In the end we can see that the MMSE is indeed very much derivative of other work that predated it. This does not undermine the significance of Marshal and Susan Folstein's work and the impact their cognitive screen has had on the care of the elderly. It does though show the hypocrisy of trying to take down material that PAR and the Folsteins believe is derivative of their work.

by: Eric Widera

Addendum:

There have been some other exceptional reviews on the legal and moral issues with PAR's stance. They include:

The Laboratorium - James Grimmelmann from the Institute for Information Law and Policy at New York Law School gives a legal analysis of PARs copyright claim. My favorite line: "any copyright claim here is legally weak and morally indefensible".

Techdirt filed this under "horrifying" - Doctors Discover Copyright Law: Cognitive Screening Test Killed Over Infringement Claims. Best line from this post:

But, even just getting beyond the copyright issue here, the very fact that Marshal Folstein, Susan Folstein, and Paul McHugh, along with their partner, Psychological Assessment Resources (PAR), are using copyright to stifle important and useful processes for diagnosing cognitive states should simply be repugnant to all.

Mindhacks - I'd check out this link mainly to read the sentence after this one - "Cashing-in on a simple and now, clinically essential, bedside test that you’ve ignored for three decades makes you seem, at best, greedy."

Slashdot - 111 comments and counting. Not very flattering for PAR and the Folsteins

NEJM review: Newman, J., & Feldman, R. (2011). Copyright and Open Access at the Bedside New England Journal of Medicine, 365 (26), 2447-2449 DOI: 10.1056/NEJMp1110652