promoting advance care planning documentation for veterans through an innovative electronic medical...

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each individual; yet the guidelines have not been widely used in Japan, and mutual communication between family mem- bers while still in a healthy stage is vital to determine prefer- ence. It has been recommended that advance care planning be considered during a comprehensive geriatric assessment. 6 To respect the best interest of individuals with dementia, advance care planning should be started early on. Taizo Wada MD, PhD Center for Southeast Asian Studies Kyoto Japan Tanaka Home Visit Clinic Kyoto Japan Hissei Imai MD Eriko Fukutomi MPH Wen-Ling Chen MPH Department of Field Medicine School of Public Health Kyoto University Kyoto Japan Kiyohito Okumiya MD, PhD Yasuko Ishimoto PhD Yumi Kimura PhD, MPH Ryota Sakamoto MD, PhD Michiko Fujisawa MD, PhD Center for Southeast Asian Studies Kyoto University Kyoto Japan Kozo Matsubayashi MD, PhD Center for Southeast Asian Studies School of Public Health Kyoto University Kyoto Japan Department of Field Medicine School of Public Health Kyoto University Kyoto Japan ACKNOWLEDGMENTS The authors wish to thank all participants in Tosa who participated in the survey. We are deeply indebted to Ms. Toshiko Nagao (Illustrator), Drs. Masayuki Ishine (Yasugi Clinic), Naomune Yamamoto (Aino Hospital), and Ku- niaki Otsuka (Chronomics and Gerontology, Tokyo Women’s Medical University) for their invaluable contri- butions to the study. Conflict of Interest: The editor in chief has reviewed the conflict of interest checklist provided by the authors and has determined that the authors have no financial or any other kind of personal conflicts with this paper. Taizo Wada receives research support from a Grant-in- Aid for Scientific Research (C) from the JSPS (24590607). Author Contributions: Wada: study concept, data analysis, writing the manuscript. Imai, Okumiya, Fuku- tomi, Ishimoto, Kimura, Chen, Sakamoto, Fujisawa, Matsubayashi: data collection. Sponsor’s Role: None. REFERENCES 1. Okamura H, Ishii S, Ishii T et al. Prevalence of dementia in Japan: A sys- tematic review. Dement Geriatr Cogn 2013;36:111118. 2. Ikejima C, Hisanaga A, Meguro K et al. Multicentre population-based dementia prevalence survey in Japan: A preliminary report. Psychogeriat- rics 2012;12:120123. 3. Sampson EL, Candy B, Jones L. Enteral tube feeding for older people with advanced dementia. Cochrane Database Syst Rev 2009:CD007209. 4. Guidelines for decision-making process in elderly care focusing on indica- tions of artificial hydration and nutrition. Japan Geriatrics Society 2012 [on-line]. [Article in Japanese] Available at http://www.jpn-geriat-soc.or. jp/proposal/pdf/jgs_ahn_gl_2012.pdf Accessed April 22, 2014. 5. Mullick A, Martin J, Sallnow L. An introduction to advance care planning in practice. BMJ 2013;347:6064. 6. Lakhani M. Consider advanced care planning in functional assessment of older people. BMJ 2011;343:5944. PROMOTING ADVANCE CARE PLANNING DOCUMENTATION FOR VETERANS THROUGH AN INNOVATIVE ELECTRONIC MEDICAL RECORD TEMPLATE To the Editor: Advance care planning (ACP) is increas- ingly recognized as an essential component of medical care. 13 ACP discussions should be documented in an eas- ily accessible location for all members of the healthcare team to review so that they can guide treatment decisions. Despite the fundamental importance of ACP, most medical institutions lack effective documentation tools. 4 Electronic medical record (EMR) reminders have been demonstrated to increase advance directive documenta- tion, 5 but no studies have examined EMR-based ACP dis- cussion documentation templates. 6 The goal of the current study was to examine the quality of ACP documentation after the implementation of a new Veterans Affairs (VA) EMR ACP template. METHODS This study was conducted at the James J. Peters VA Medi- cal Center in Bronx, New York, a tertiary care facility with 311 authorized hospital beds and 120 nursing home beds. Study approval was obtained from the VA institu- tional review board. A new template for ACP discussion documentation was implemented in the EMR in February 2009 as a part of larger quality improvement project to promote ACP documentation. This consisted of three parts: assessment of the individual’s decision-making capacity; the individ- ual’s desired surrogate decision-maker; and a narrative summary of the individual’s preferences regarding personal goals, values, and wishes for future medical treatment in the event of worsening health status. For individuals with- out decision-making capacity, the third part reflected discussions with the healthcare agent or surrogate deci- sion-maker. Once completed, the ACP discussion note became easily accessible in the fixed, highlighted “Post- ings” section of the EMR face sheet (Figure 1). When ACP discussions occurred more than once for a given individ- ual, the newest signed note automatically appeared above the previous under “Postings.” The last 100 consecutive notes were reviewed. If an individual lacked decisional capacity, the reason for incapacity was reviewed. Note content was reviewed for description about goals and values, desired place of death, and care preferences. Care preferences were divided into three categories regarding desired limitations on medi- cal interventions (no limitation, some limitation, and com- fort care only). Notes lacking documentation of healthcare preferences were also reviewed for reasons of omission. JAGS SEPTEMBER 2014–VOL. 62, NO. 9 LETTERS TO THE EDITOR 1811

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Page 1: Promoting Advance Care Planning Documentation for Veterans Through an Innovative Electronic Medical Record Template

each individual; yet the guidelines have not been widely usedin Japan, and mutual communication between family mem-bers while still in a healthy stage is vital to determine prefer-ence. It has been recommended that advance care planningbe considered during a comprehensive geriatric assessment.6

To respect the best interest of individuals with dementia,advance care planning should be started early on.

Taizo Wada MD, PhDCenter for Southeast Asian Studies Kyoto Japan

Tanaka Home Visit Clinic Kyoto Japan

Hissei Imai MDEriko Fukutomi MPHWen-Ling Chen MPH

Department of Field Medicine School of Public HealthKyoto University Kyoto Japan

Kiyohito Okumiya MD, PhDYasuko Ishimoto PhD

Yumi Kimura PhD, MPHRyota Sakamoto MD, PhD

Michiko Fujisawa MD, PhDCenter for Southeast Asian Studies Kyoto University

Kyoto Japan

Kozo Matsubayashi MD, PhDCenter for Southeast Asian Studies School of Public

Health Kyoto University Kyoto JapanDepartment of Field Medicine School of Public Health

Kyoto University Kyoto Japan

ACKNOWLEDGMENTS

The authors wish to thank all participants in Tosa whoparticipated in the survey. We are deeply indebted to Ms.Toshiko Nagao (Illustrator), Drs. Masayuki Ishine (YasugiClinic), Naomune Yamamoto (Aino Hospital), and Ku-niaki Otsuka (Chronomics and Gerontology, TokyoWomen’s Medical University) for their invaluable contri-butions to the study.

Conflict of Interest: The editor in chief has reviewedthe conflict of interest checklist provided by the authorsand has determined that the authors have no financial orany other kind of personal conflicts with this paper.

Taizo Wada receives research support from a Grant-in-Aid for Scientific Research (C) from the JSPS (24590607).

Author Contributions: Wada: study concept, dataanalysis, writing the manuscript. Imai, Okumiya, Fuku-tomi, Ishimoto, Kimura, Chen, Sakamoto, Fujisawa,Matsubayashi: data collection.

Sponsor’s Role: None.

REFERENCES

1. Okamura H, Ishii S, Ishii T et al. Prevalence of dementia in Japan: A sys-

tematic review. Dement Geriatr Cogn 2013;36:111–118.2. Ikejima C, Hisanaga A, Meguro K et al. Multicentre population-based

dementia prevalence survey in Japan: A preliminary report. Psychogeriat-

rics 2012;12:120–123.3. Sampson EL, Candy B, Jones L. Enteral tube feeding for older people with

advanced dementia. Cochrane Database Syst Rev 2009:CD007209.

4. Guidelines for decision-making process in elderly care focusing on indica-

tions of artificial hydration and nutrition. Japan Geriatrics Society 2012

[on-line]. [Article in Japanese] Available at http://www.jpn-geriat-soc.or.

jp/proposal/pdf/jgs_ahn_gl_2012.pdf Accessed April 22, 2014.

5. Mullick A, Martin J, Sallnow L. An introduction to advance care planning

in practice. BMJ 2013;347:6064.

6. Lakhani M. Consider advanced care planning in functional assessment of

older people. BMJ 2011;343:5944.

PROMOTING ADVANCE CARE PLANNINGDOCUMENTATION FOR VETERANS THROUGH ANINNOVATIVE ELECTRONIC MEDICAL RECORDTEMPLATE

To the Editor: Advance care planning (ACP) is increas-ingly recognized as an essential component of medicalcare.1–3 ACP discussions should be documented in an eas-ily accessible location for all members of the healthcareteam to review so that they can guide treatment decisions.Despite the fundamental importance of ACP, most medicalinstitutions lack effective documentation tools.4

Electronic medical record (EMR) reminders have beendemonstrated to increase advance directive documenta-tion,5 but no studies have examined EMR-based ACP dis-cussion documentation templates.6 The goal of the currentstudy was to examine the quality of ACP documentationafter the implementation of a new Veterans Affairs (VA)EMR ACP template.

METHODS

This study was conducted at the James J. Peters VA Medi-cal Center in Bronx, New York, a tertiary care facilitywith 311 authorized hospital beds and 120 nursing homebeds. Study approval was obtained from the VA institu-tional review board.

A new template for ACP discussion documentationwas implemented in the EMR in February 2009 as a partof larger quality improvement project to promote ACPdocumentation. This consisted of three parts: assessmentof the individual’s decision-making capacity; the individ-ual’s desired surrogate decision-maker; and a narrativesummary of the individual’s preferences regarding personalgoals, values, and wishes for future medical treatment inthe event of worsening health status. For individuals with-out decision-making capacity, the third part reflecteddiscussions with the healthcare agent or surrogate deci-sion-maker. Once completed, the ACP discussion notebecame easily accessible in the fixed, highlighted “Post-ings” section of the EMR face sheet (Figure 1). When ACPdiscussions occurred more than once for a given individ-ual, the newest signed note automatically appeared abovethe previous under “Postings.” The last 100 consecutivenotes were reviewed.

If an individual lacked decisional capacity, the reasonfor incapacity was reviewed. Note content was reviewedfor description about goals and values, desired place ofdeath, and care preferences. Care preferences were dividedinto three categories regarding desired limitations on medi-cal interventions (no limitation, some limitation, and com-fort care only). Notes lacking documentation of healthcarepreferences were also reviewed for reasons of omission.

JAGS SEPTEMBER 2014–VOL. 62, NO. 9 LETTERS TO THE EDITOR 1811

Page 2: Promoting Advance Care Planning Documentation for Veterans Through an Innovative Electronic Medical Record Template

RESULTS

The last 100 consecutive notes (April–August 2011)represented conversations with 93 individuals (mean age75.1, 99% male, 91% community dwelling). The mostcommon diagnoses were active cancer, dementia, chronicobstructive pulmonary disease, and congestive heartfailure; most individuals had at least one comorbidity.Geriatricians or palliative medicine physicians wrote 73of the notes.

Twenty-one notes documented a lack of decisionalcapacity, most commonly because of dementia. Of theremaining 79 notes documenting the presence of deci-sional capacity, 55 (70%) reported no previously com-pleted advance directives. Of those lacking advancedirectives, 48 (87%) documented a desired surrogatedecision-maker.

Of the 100 reviewed notes, 52 had text reflectinggoals and values, and 18 mentioned a desired place ofdeath. Eighty notes contained documentation of care pref-erences. Ten percent documented a preference for all carepossible, and 90% described some desired limitation ofmedical treatment (78% preferred some limitation and12% preferred comfort care only). Of the 20 notes with-out documentation of care preferences, 70% contained areason for the lack of care preferences (indecisive, 30%;unwilling to discuss, 25%; other, 15%).

DISCUSSION

The authors believe that this small study is among the firstto illustrate the great potential for making ACP documen-tation standardized and easily accessible in an EMR. Thisstudy had several findings. First, by documenting discus-sions with surrogates, the template enabled ACP documen-tation even in individuals without decision-makingcapacity, who would be unable to complete advancedirectives. Second, the vast majority of notes contained

important information regarding desired surrogate deci-sion-makers and care preferences. Most ACP discussionsreflected the desire for some limitation of medical interven-tions currently or in the event of worsening health.

This study had a number of limitations. Only a smallnumber of notes were retrospectively reviewed. Becausethis was conducted in a single facility with mostly men,generalizability is uncertain. This study did not address theaccuracy of the documentation or provide data on out-comes, such as the degree to which the individual’sexpressed wishes were adhered to.

This study illustrates that interventions to make EMR-based ACP documentation easily accessible are feasible inthe VA system and are important to promoting providerawareness of individual and family care preferences. Good,accessible documentation is critical to honoring individu-als’ wishes. This information is fundamental to providinghigh-quality person-centered care and should be availablein all EMRs.

Shunichi Nakagawa, MDAdult Palliative Care Service, Department of Medicine,

Columbia University Medical Center, New York,New York

Elizabeth M. Clark, MDDivision of Geriatrics, Montefiore Medical Center, Bronx,

New York

Elizabeth L. Cobbs, MDDivision of Geriatrics and Palliative Medicine,

Department of Medicine, George Washington University,Washington, District of Columbia

Geriatrics, Extended Care and Palliative Care, VeteransAffairs Medical Center, Washington, District of Columbia

Elayne Livote, PhDOptuminsight, QualityMetric, Inc., Lincoln, Rhode Island

Figure 1. Advance care planning (ACP) discussion documentation template. The tab on the right upper corner can be reachedanytime the medical record of the patient is open. When it is clicked, the list of ACP discussion notes pops up.

1812 LETTERS TO THE EDITOR SEPTEMBER 2014–VOL. 62, NO. 9 JAGS

Page 3: Promoting Advance Care Planning Documentation for Veterans Through an Innovative Electronic Medical Record Template

Kanwal S. Awan, MDGeriatrics, Extended Care and Palliative Care, Veterans

Affairs Medical Center, Washington, District of ColumbiaGeriatric Medicine and Gerontology, Johns Hopkins

Bayview Medical Center, Baltimore, Maryland

Karen A. Blackstone, MDDivision of Geriatrics and Palliative Medicine,

Department of Medicine, George Washington University,Washington, District of Columbia

Geriatrics, Extended Care and Palliative Care, VeteransAffairs Medical Center, Washington, District of Columbia

Elizabeth C. Lindenberger, MDDepartment of Geriatrics and Palliative Medicine, Icahn

School of Medicine at Mount Sinai, New York, New YorkGeriatric Research, Education and Clinical Center, James J

Peters VA Medical Center, Bronx, New York

ACKNOWLEDGMENTS

Dr. Nakagawa was a geriatrics fellow in Icahn School ofMedicine at Mount Sinai, and this research was conductedat the James J. Peters VA Medical Center, Bronx, NewYork. The authors would like to acknowledge the supportof the Geriatric Research, Education and Clinical Center.The authors would also like to thank the healthcareproviders, the veterans, and their families for their partici-pation.

Dr. Nakagawa has presented this work at the Presi-dential Poster Session of the 2012 American GeriatricsSociety Annual Meeting.

Conflict of Interest: The editor in chief has reviewedthe conflict of interest checklist provided by the authorsand has determined that they have no financial or anyother kind of personal conflicts with this paper.

Author Contributions: Study concept and design: Nak-agawa, Clark, Cobbs, Blackstone, Lindenberger. Acquisi-tion of subjects and data: Nakagawa, Awan. Analysis andinterpretation of data: Nakagawa, Clark, Livote, Linden-berger. Preparation of manuscript: Nakagawa, Clark,Cobbs, Livote, Lindenberger.

Sponsor’s Role: There is no sponsor for this paper.

REFERENCES

1. Steinhauser KE, Christakis NA, Clipp EC et al. Factors considered impor-

tant at the end of life by patients, family, physicians, and other care provid-

ers. JAMA 2000;284:2476–2482.2. Detering KM, Hancock AD, Reade MC et al. The impact of advance care

planning on end of life care in elderly patients: Randomised controlled trial.

BMJ 2010;340:c1345.

3. Zhang B, Wright AA, Huskamp HA et al. Health care costs in the last week

of life associations with end-of-life conversations. Arch Intern Med

2009;169:480–488.4. Yung VY, Walling AM, Min L et al. Documentation of advance care

planning for community-dwelling elders. J Palliat Med 2010;13:861–867.5. Lindner SA, Ben Davoren J, Vollmer A et al. An electronic medical record

intervention increased nursing home advance directive orders and documen-

tation. J Am Geriatr Soc 2007;55:1001–1006.6. Bose-Brill S, Pressler TR. Commentary: Opportunities for innovation and

improvement in advance care planning using a tethered patient portal in

the electronic health record. J Prim Care Community Health 2012;3:

285–288.

CASE REPORTS

PREVALENCE AND CLINICAL FEATURES OF ACUTEINTERMITTENT PORPHYRIA: A RETROSPECTIVEANALYSIS

To the Editor: Acute intermittent porphyria (AIC) is arare inherited entity characterized by abdominal painand a wide range of nonspecific symptoms that can beexacerbated through a multitude of environmental fac-tors.1 Public attention has been given to the acute por-phyrias because they may have affected the character ofKing George III and the creative genius of Vincent vanGogh.2 The porphyrias are eight genetically distinct met-abolic disorders, mainly inherited, in which there aredefects in normal porphyrin and heme synthesis. Tradi-tionally, the porphyrias have been classified as hepatic orerythropoietic, although some have overlapping features.3

The cardinal clinical features are cutaneous (due to theskin-damaging effects of excess deposited porphyrins) orneurovisceral attacks of pain, sometimes with weakness,delirium, and seizures. Of the acute hepatic porphyrias, themost frequent is autosomal-dominant AIC—a metabolic dis-order of heme synthesis due to a deficiency in the porphobili-nogen deaminase enzyme; it affects women more than menand has a low penetrance, which is one reason why differentclinical manifestations appear at different ages; moreover,because the wide range of nonspecific symptoms may occurwith more-common conditions, individuals with AIP maynot be readily diagnosed.3 There is an ethnic predispositionin Northern European countries known as Swedish por-phyria.1 The purpose of this study was to document the prev-alence and clinical features of AIC in a department ofinternal medicine.

Between January 2006 and December 2013, 7,895hospitalized individuals on a medical ward were retro-spectively evaluated; four (0.05%) with AIC were identi-fied (three female, one male, aged 85, 75, 90, and 81);the remaining individual with other types of porphyriaare not included in this analysis. All individuals werehospitalized for recurrent acute abdominal pain, vomit-ing, weakness, and confusion. Patient 2 also had ortho-static hypotension and bradycardia. Factors precipitatingthe acute attack were severe weight loss due to stomachcancer in Patient 3, urinary tract sepsis in Patients 1and 2, and alcohol abuse in Patient 4. Physical examina-tion found no abnormalities in any of these individualsexcept for moderate quadriparesis in Patient 3 andabnormal behavior with hallucinations. Cerebral mag-netic resonance imaging, abdominal computed tomogra-phy, gastroscopy, and colonoscopy were all normal.Electromyography showed acute motor neuropathy inPatient 3, and cerebrospinal fluid test revealed slightlyhigh protein levels in all four. Patient 3 had low serumsodium level (124 mmol/L). When a urinary catheterwas placed, dark urine (Figure 1) was drained; urinalysisshowed no hematuria or pyuria.4 A diagnosis of AIPwas confirmed in all four individuals because of highurinary excretion of porphobilinogen. They were treatedwith hematin and adequate calorie intake, and symptoms

JAGS SEPTEMBER 2014–VOL. 62, NO. 9 LETTERS TO THE EDITOR 1813