R E V I E W S & A N A LY S E S Family Members Advocate for Improved Identification of Patients with Dementia in the Acute Care Setting Michelle Feil, MSN, RN, CPPS INTRODUCTION Senior Patient Safety Analyst Pennsylvania Patient Safety Authority Pam Tripaldi’s father received a diagnosis of Alzheimer disease in 2007. Tripaldi served as her father’s primary caregiver for the final four years of his life, during which he received care at several different hospitals. During these hospitalizations, she encoun- ABSTRACT tered near-miss patient safety events in which staff did not recognize her father’s A family member of a patient with dementia. Tripaldi contacted the Pennsylvania Patient Safety Authority in 2015 and dementia contacted the Pennsylvania recounted examples of situations in which hospital staff either obtained inaccurate Patient Safety Authority and described information from her father or failed to provide the assistance necessary to support her several “near miss” patient safety father in activities of daily living, such as feeding himself. events in which hospital staff obtained Tripaldi said, “If you asked my dad his name and date of birth—sure, he knew that. But inaccurate information from the patient, they would ask him things like ‘Have you had surgery?’ and he would say no. Well yes unaware of the patient’s dementia he did, he had quadruple bypass surgery!” She also described situations in which her diagnosis. Healthcare facilities reported father did not get out of bed or did not eat, because the staff asked him if he wanted 3,710 events through the Pennsylvania to or if he needed assistance and he would say no. “And sometimes I just couldn’t be Patient Safety Reporting System between upset with the staff, because I am not sure what information they were privy to because January 2005 and December 2014 of HIPAA [Health Insurance Portability and Accountability Act].”* involving patients with dementia or In looking for solutions to this problem, Tripaldi considered colored wristbands. “He potentially unrecognized dementia. wore a wristband for fall risk and another one for allergies.” Tripaldi asked, “Couldn’t Analysts reviewing these reports found he wear a wristband so that everyone would know that he had dementia?” Tripaldi 63 similar events in which hospital blogs about this experience, communicates with other patients and family mem- staff obtained inaccurate information bers with similar hospital experiences, and works with a chapter of the Alzheimer’s or consent from these patients. Five Association to raise awareness about the issue. Initially, she proposed using a purple failure modes were identified: (1) fail- wristband to identify patients with dementia, because that is the color for Alzheimer ure to recognize preexisting dementia; disease. After discovering that purple is the color used to indicate DNR (i.e., do (2) failure to assess competence and not resuscitate), Tripaldi began to advocate for use of a black wristband because, decision-making capacity of patients “Alzheimer’s is a disease that is dark, fearful and lonely to the patient, family members with dementia; (3) failure to identify a and caregivers. It also brings to mind the POW and MIA flag, which like our loved reliable historian or surrogate decision ones, are lost but never forgotten.” maker for patients with dementia; (4) failure to contact a reliable histo- In response to this inquiry, Authority analysts queried the Authority’s Pennsylvania rian or surrogate decision maker when Patient Safety Reporting System (PA-PSRS) database for reports of events similar to information or consent was required those described by Tripaldi to determine what events had been reported for patients for care; and (5) failure to communi- with dementia. Analysts were particularly interested to learn whether any reports men- cate the patient’s dementia diagnosis, tioned use of colored wristbands to communicate a diagnosis of dementia, because competence, and decision-making the Authority has written about the risks involved in using colored wristbands to com- capacity with all members of the health- municate clinical information, other than patient identification, and has suggested that care team. Risk reduction strategies hospitals limit the number and standardize the meanings of specific colors used for targeting these failure modes include patient wristbands.1-2 The Authority has also warned of potential risk associated with screening for dementia, assessing the use of colored community wristbands (e.g., yellow Livestrong bracelets) not sanc- capacity, identifying and communicat- tioned for hospital use.3 ing with surrogate decision makers, Authority analysis of events revealed similar instances in which inaccurate informa- and standardizing communication of tion or consent was obtained from patients with dementia or potentially unrecognized a patient’s dementia diagnosis with all dementia. Risk reduction strategies were identified through a review of the literature hospital staff. (Pa Patient Saf Advis 2016 Mar;13[1]:1-10.) * The HIPAA Privacy Rule can be misinterpreted as prohibiting the communication of patient medical information between healthcare providers and hospital staff. The rule allows for disclosure of this infor- mation for treatment purposes, and requires that hospitals develop policies to identify staff that require access to this information and the minimum amount necessary to carry out their job duties and provide care to the patient. For more information please see http://www.hhs.gov/hipaa/for-professionals/privacy/ guidance/minimum-necessary-requirement/index.html Vol. 13, No. 1—March 2016 Pennsylvania Patient Safety Advisory Page 1 ©2016 Pennsylvania Patient Safety Authority R E V I E W S & A N A LY S E S and dementia care guidelines. Other ideas to improve patient identification were RECOGNIZING DEMENTIA AND DEMENTIA DUE TO gathered from interviewing hospital staff, ALZHEIMER DISEASE family members of patients with demen- According to the American Psychiatric Association, the following criteria must be tia, and dementia advocacy groups. present to establish a diagnosis of dementia (i.e., major neurocognitive disorder) and dementia due to Alzheimer disease. Background Dementia is a neurocognitive disorder Dementia characterized by an insidious onset and — Significant deficits are identified in one or more of the following cognitive gradual decline in cognitive function that domains: complex attention, executive function, language, memory and learn- results in an inability to carry out activi- ing, perceptual-motor skills, or social cognition. ties of daily living independently. Multiple — Cognitive deficits impair the individual’s ability to carry out everyday activities causes for dementia exist; the most preva- independently (e.g., paying bills, managing medications). lent form is Alzheimer disease, which — These deficits are not attributable solely to delirium or better explained by comprises 60% to 80% of cases.4 See another mental disorder. “Recognizing Dementia and Dementia Dementia due to Alzheimer disease Due to Alzheimer Disease.” — Criteria for dementia are met AND an Alzheimer disease genetic mutation is The prevalence of dementia increases with identified from family history or genetic testing. age, with estimates ranging from 1% to — Cognitive decline occurs slowly over time, with deficits seen in memory and 2% of adults at age 65 up to a high of 30% learning and at least one other cognitive domain. by age 85.4 The Alzheimer’s Association — Cognitive function declines steadily over time, without extended plateaus. estimates that 270,000 adults age 65 or — These cognitive deficits are not better explained by other physiologic or psy- older received a diagnosis of Alzheimer chiatric causes (e.g., cerebrovascular disease, substance abuse, other mental disease alone in Pennsylvania in 2015, and disorders). there will be 320,000 by 2025. Nationally Source: Neurocognitive disorders. In: American Psychiatric Association. Diagnostic and sta- this number was 5.1 million in 2015 and tistical manual of mental disorders (5th ed.). Arlington (VA): American Psychiatric Publishing; is expected to increase to 7.1 million by 2013:591-643. 2025. Because of the large number of aging baby boomers and extended life expectancy of the general population, this number is predicted to reach 13.8 million language, and complex attention can surrogate), and ultimately delegated deci- by 2050.5 directly impede an individual’s ability to sion making (i.e., reliance on a surrogate recall, communicate, or understand infor- decision maker) becomes necessary.11-12 Despite increasing prevalence of demen- mation necessary to participate in medical tia, many individuals with this condition decision-making, especially in later stages METHODS do not have a documented diagnosis. of dementia.11-12 For these reasons, it is In fact, investigators estimate that physi- Pennsylvania Patient Safety Authority important to obtain information from cians fail to recognize dementia in 19% analysts identified events involving a family member or other reliable infor- to 67% of patients in the outpatient patients with dementia by querying the mant when assessing or treating a patient setting—particularly in patients in earlier Authority’s PA-PSRS database for events with dementia.13-14 stages of disease with milder forms of containing the terms “dement” and cognitive impairment.6-7 In these patients, A diagnosis of dementia does not pre- “Alzheimer” (including misspellings) cognitive deficits may not be detected, or clude a patient from actively participating that were reported over a 10-year period, when they are, they are incorrectly attrib- in his or her own decision making and from January 2005 through December uted to normal aging8-9 or mild cognitive care; many are able to express values and 2014. Analysts also queried the PA-PSRS impairment.10 preferences relevant to medical decisions. database for events reported for patients However, with advanced dementia, a shift age 65 or older that contained the term Deficits in the cognitive domains of mem- to shared decision making (i.e., involving “poor historian” to identify events involv- ory and learning (present in all cases of the patient and a family member or other ing patients with possibly unrecognized possible or probable Alzheimer disease), Page 2 Pennsylvania Patient Safety Advisory Vol. 13, No. 1—March 2016 ©2016 Pennsylvania Patient Safety Authority dementia. Together, these reports consti- Keywords, Similar Events, and When reviewing the chart of a [male tuted a dataset of events involving patients Failure Modes older than 75 years] before doing a with dementia or potentially unrecog- Analysts identified 627 event reports surgical procedure, I discovered that nized dementia that was used for further that contained the keywords “historian,” there was no consent. My managers analysis. “wrong,” “said,” “aware,” “consent,” called the unit and the consent was First, analysts categorized reports using “didn’t,” and “know.” Of these, 63 event sent down to them from the floor. PA-PSRS event type and harm score. report narratives described events similar The patient was on contact isolation Then, analysts queried the dataset for to those described by Tripaldi; the major- precautions, so I was unable to leave reports containing the keywords “histo- ity were reported as errors related to the room to look at the consent. My rian,” “wrong,” “said,” “aware,” “consent,” procedures, treatments, or tests (n = 47). managers called into the room to say “didn’t,” and “know” to find examples Five failure modes were identified through that it was okay to proceed. After the of events similar to those described by iterative thematic analysis of these case ended I looked at the consent Tripaldi (i.e., events in which hospital 63 event report narratives (see Figure). and found that it had been “signed” staff obtained inaccurate or incomplete by the patient who has Parkinson’s information, or consent, from patients PA-PSRS Events and dementia and was not very with dementia or potentially unrecog- responsive. His signature looked like The following is an example of a patient nized dementia). Analysts then conducted a scribbled line on the paper. The safety event in which inaccurate informa- an iterative thematic analysis of event- consent was not signed by next of kin tion and informed consent was obtained report narratives to identify failure modes or any person capable of giving con- from a patient who was not initially recog- described in this subset of similar events. sent for the procedure. nized as having dementia by members of Further, analysts queried the dataset of the healthcare team.* A [female older than 90 years] with events involving patients with dementia or a history of dementia was scheduled A [male older than 80 years] identi- potentially unrecognized dementia using for an interventional radiology (IR) fied himself and stated that he was the terms “band” (as in “wristband”), procedure. The family left to get to get injections in his left lower back “gown,” “sign,” and “notify” to find event something to eat and returned to for left low back and leg pain. The reports that may have described a method find the patient had been sent down surgical consent signed by the patient to identify patients with dementia. to IR. The nurse taking care of stated right low back, as well as patient called IR to report that the paperwork in his chart. I notified the consent for the procedure had not RESULTS surgical resident who then changed yet been signed and was told that According to the query of PA-PSRS, the consent to the left side. Upon consent would be obtained in their Pennsylvania healthcare facilities reported entrance to the operating room, I department. The nurse was told that 3,710 events involving patients with informed the attending surgeon of the patient needed to be sent down dementia or potentially unrecognized this situation and he said that the because the physician was there and dementia, including 96 reports for patient has dementia and his son ready to proceed. The family returned patients age 65 or older, that contained signs his paperwork. The surgical and was very upset. IR was called the term “poor historian” without men- resident called the patient’s physician and told to stop until the family could tion of dementia or Alzheimer disease. to clarify, then returned to say that come down. The consent was signed we would be now doing the patient’s by the son. The family spoke with a Event Type and Harm Score right side. patient representative about this near Falls were the most frequently reported The following two reports describe miss and concern about confused event type (n = 1,710, 46.1%), followed by instances in which informed consent was patients signing consents. impaired skin integrity (n = 958, 25.8%). obtained from patients with an estab- The following report describes an event in The majority of events were reported lished diagnosis of dementia, without the which information was obtained from a as Incidents without harm to patients input of family members. patient older than the age of 80 who was (n = 3,194, 86.1%). noted to be a “poor historian” but does not mention a diagnosis of dementia or * The details of the PA-PSRS event narratives Alzheimer disease. Though reported as an in this article have been modified to preserve Incident without harm to the patient, this confidentiality. event involved a surgical procedure that Vol. 13, No. 1—March 2016 Pennsylvania Patient Safety Advisory Page 3 ©2016 Pennsylvania Patient Safety Authority R E V I E W S & A N A LY S E S Figure. The Sequence of Failure Modes In Events Involving Patients with Dementia (N = 63), Reported to the Pennsylvania Patient Safety Authority, 2005 through 2014 did not proceed as expected because of inaccurate information provided by the patient. Failure to recognize A [male older than 80 years] is a preexisting dementia poor historian who denied having (n = 4) hardware in his leg prior to surgery. During surgery to amputate the leg, the surgeon encountered an intra- medullary rod. Orthopedic surgery was consulted and an x-ray was done to see the extent of the rod. Under the supervision of the orthopedic surgeon, the attending surgeon cut the rod. The surgery was completed without further incident. Lack of Methods to Identify Failure to assess competence and Patients with Dementia decision-making Two hundred fifty-two event reports for capacity (n = 25) patients with dementia or potentially unrecognized dementia (N = 3,710) described the use of colored wristbands to communicate fall risk. Five described using fall-risk signs, and three described Failure to identify a using colored wristbands or gowns to reliable historian communicate risk for wandering or or surrogate decision elopement. Although cognitive impair- maker (n = 22) ment contributes risk for each of these events, no reports described the use of these methods to identify patients with dementia or other cognitive impairment, independent of these indications. DISCUSSION Failure to contact a Events reported through PA-PSRS suggest reliable historian or that failing to communicate a patient’s surrogate decision dementia diagnosis to all members of maker (n = 47) the healthcare team is a valid concern in Pennsylvania hospitals. However, it is only one of the aforementioned five failure modes (see Figure), all of which are wor- thy of attention. Failure to communicate a patient’s dementia diagnosis, competence, Failure to Recognize Preexisting MS16087 and decision-making capacity (n = 6) Dementia PA-PSRS event reports describe situations Note: Illustrated modes categorize 63 events in which hospital staff obtained inaccu- rate or incomplete information or consent from patients with dementia or potentially in which members of the healthcare team unrecognized dementia. Failure mode total exceeds event total because some events failed to recognize that a patient had involved multiple failure modes. dementia. Factors that may contribute Page 4 Pennsylvania Patient Safety Advisory Vol. 13, No. 1—March 2016 ©2016 Pennsylvania Patient Safety Authority to a missed diagnosis of dementia include of structural changes has been reached, term.32 In Pennsylvania, “incapacitated the following: symptoms become noticeable, and cogni- adult” is the legal term used to describe Cognitive aging. Some cognitive changes tive function usually declines rapidly.18-20 a person “whose abilities to receive and are to be expected with normal aging. Protocols for screening and diagnosis. evaluate information effectively and These changes are associated with struc- “You would never know my father had communicate decisions in any way are tural and functional changes in the brain dementia, unless you were asking him spe- impaired to such a significant extent that that occur over a person’s lifetime. The cific screening questions,” Tripaldi said. they are partially or totally unable to man- types and rates of these cognitive changes age their financial resources or to meet A large number of tools exist to screen essential requirements for their physical are influenced by a multitude of factors for cognitive impairment, but none are (e.g., genetics, educational level, health health and safety.”33 recognized as the gold standard for screen- status) and vary widely among individu- ing and diagnosis of dementia.21-23 The Ideally a patient who is deemed com- als.8-9 In general, as people age, gradual Mini-Mental State Examination (MMSE) petent would have the capacity to declines occur across all domains of cog- has been widely researched and is the understand treatment options (includ- nitive functioning, and steeper declines screening tool most commonly used by ing risks and benefits), make a decision, are seen with advanced age. As a result, primary care providers and geriatric spe- and explain the rationale or values that cognitive declines can be expected in cialists. The MMSE takes 10 minutes to support their decision. In patients with the majority of the oldest members of administer and is used to assess cognitive memory impairment, this decision may society.15-16 ability within five domains: orientation, be forgotten, but the patient may still be Mild cognitive impairment. Mild cogni- registration, attention and calculation, judged to have decision-making capacity if tive impairment is an interim clinical recall, and language.23 he or she makes the same decision when diagnosis that bridges the gap between presented with the same information at The Clock Drawing Test (CDT) and the another point in time.32 cognitive aging and dementia.17 It is diag- Mini-Cog are two brief screening tools nosed when a person’s cognitive function that have become more widely used, Drane outlined a sliding scale model is impaired beyond what would normally either alone or in conjunction with the to determine competence in patients be expected for their age and educational MMSE.23 The CDT takes about one with dementia. According to the model, level, but this impairment does not inter- minute to administer; the patient follows awareness of one’s medical condition and fere with instrumental activities of daily specific instructions to draw the face assent (i.e., “going along with”) may be living. Once the ability to carry out these of a clock and cognitive impairment is sufficient when a medical decision has activities independently is impaired, crite- identified through application of scoring low potential to result in harm. As the ria for dementia are met. People with mild criteria to elements in the patient’s draw- potential for harm increases, a deeper cognitive impairment are at high risk for ing.24 The Mini-Cog takes about three understanding or appreciation of risks developing subsequent dementia.4,10,15 minutes to administer and combines the and benefits, along with the ability to Education level and cognitive reserve. CDT with a three-item delayed word recall provide a rationalization for a decision, When asked why she thought hospital test.25-27 may be required.34 staff did not recognize her father as hav- ing dementia, Tripaldi said, “My father Failure to Assess Competence Failure to Identify a Reliable was a brilliant man, and he could hide and Decision-Making Capacity Historian or Surrogate Decision it well.” Maker Analysis of PA-PSRS event reports Cognitive declines can be smaller and less suggests that in some events in which Events have been reported through noticeable among patients with higher information or consent was obtained PA-PSRS in which hospital staff have educational levels and good baseline from patients with dementia, staff did failed to identify a reliable historian or cognitive functioning.15-16 The theory of not recognize impaired competence and surrogate decision maker for a patient cognitive reserve suggests that higher lev- decision-making capacity. Although it with dementia or other cognitive impair- els of education, occupational complexity, is important to preserve autonomy and ment. If a patient with dementia arrives reading ability, and IQ protects the brain, agency through engaging patients with unaccompanied, clinicians may struggle to allowing it to function at a high level for dementia in decision-making,28-29 it is also identify the appropriate historian or surro- a longer period of time and compensate important to assess their capacity to do gate decision maker or even to determine for the pathologic changes that cause so.30-31 Competency is the legal term for whether one exists. dementia. However, once a threshold this ability, and capacity is the clinical Vol. 13, No. 1—March 2016 Pennsylvania Patient Safety Advisory Page 5 ©2016 Pennsylvania Patient Safety Authority R E V I E W S & A N A LY S E S In the event that a patient with dementia Failure to Communicate the Association (Brooksville, Florida). Like is deemed to be an “incapacitated adult” Patient’s Dementia Diagnosis, Tripaldi, LeBlanc originally wanted to use and has not established a surrogate deci- Competence, and Decision- a purple wristband to identify patients sion maker, Pennsylvania law allows for Making Capacity with dementia, but learned that this could a court-appointed guardian. Any person be confused with DNR in some hospi- Analysis of event reports suggests concerned about the welfare of an inca- tals. Hospital staff were also concerned that even in cases in which a patient’s pacitated person may initiate this process. with using wristbands to communicate dementia diagnosis is established and The orphan’s court will then appoint a a diagnosis, because of HIPAA privacy their competence and capacity for guardian, giving preference to someone rules that prohibit sharing personal health decision-making has been evaluated, named by the incapacitated person. In information. Ultimately, the team decided this information is not consistently com- urgent situations a temporary guardian to use the purple angel logo, a symbol municated to members of the healthcare may be appointed for a 72-hour period, used internationally to raise awareness team. Ideally, this information would be with extensions for up to 20 days.33 In of dementia and to recognize dementia- communicated during patient hand-off, emergencies, healthcare providers may friendly communities.38 defined by Cohen and Hilligoss as “the deliver necessary medical care without Nurses screen patients for cognitive exchange between health professionals of consent or guardianship, if it can be deter- impairment upon admission using the information about a patient accompany- mined that a reasonable person would Mini-Cog and place a dime-sized sticker ing either a transfer of control over, or of have consented to such treatment.35 with the purple angel logo on the identifi- responsibility for, the patient.”36 But even when communicated during hand-off, this cation wristband and a purple angel sign Failure to Contact a Reliable information may not be made known to outside the room for patients who screen Historian or Surrogate Decision other hospital staff. positive. “The purple angel does not say Maker that this person has a specific diagnosis,” Tripaldi expressed frustration with “a lot THE ALZHEIMER’S/DEMENTIA LeBlanc said. “It is simply an ‘at-risk’ of little things” that happened when she HOSPITAL WRISTBAND PROJECT symbol that says that this patient has, or was not by her father’s side and hospital possibly has cognitive issues, and that all Gary LeBlanc is the founder of the information provided by the patient needs staff failed to contact her. “I tried to be Alzheimer’s/Dementia Hospital to be verified.” there as much as I could. Nothing terrible Wristband Project.37 Like Tripaldi, happened, thank goodness. But I am sure Margaret Gordon, chief quality officer LeBlanc served as primary caregiver to there are people who have had things hap- and interim chief nursing officer at his father, who had Alzheimer disease. pen with disastrous results.” Bayfront Health of Brooksville, further LeBlanc said, “One day I looked at my Events have been reported through dad and realized, ‘My goodness, I know clarifies: “The purple angel indicates PA-PSRS in which a reliable historian or this man better than he knows himself.’ cognitive impairment, but we do not surrogate decision maker for a patient He didn’t know where he grew up, he use it for patients with delirium. We do with dementia was known to exist but didn’t know any of his brothers or sisters, not want staff to assume that an older was not contacted by hospital staff. In he didn’t recognize any of his friends. person has dementia, when in fact they some event reports it is unclear whether And, when he went to the hospital, who have delirium due to an acute cause that an attempt was made to contact this were they asking for the answers to ques- should be identified and corrected.” person, and in other reports attempts tions? Him!” Gordon reports success in improving care to contact the person were unsuccess- and preventing adverse events for patients LeBlanc said, “There’s nothing that hap- ful. Some events resulted in delayed or with dementia since implementing the pens in the hospital that doesn’t involve missed patient care. In other events care wristband project in 2013. When asked a question. ‘How do you feel? Where do was provided, but family members or whether the wristbands were the key, she you hurt? What do you want for lunch?’ other members of the healthcare team said, “The real key is education.” LeBlanc These questions are the root of all evil for raised concerns or questioned the appro- and his team provide education to all hos- people with dementia.” priateness of proceeding without this pital staff, both clinical and non-clinical, communication. In response, he developed the Wristband as well as volunteers and first responders. Project in collaboration with Bayfront “We have raised awareness. But,” Gordon Health of Brooksville hospital leadership said, “only hospitals with a strong patient and the local chapter of the Alzheimer’s safety culture and a commitment to Page 6 Pennsylvania Patient Safety Advisory Vol. 13, No. 1—March 2016 ©2016 Pennsylvania Patient Safety Authority improving care for patients with dementia Screen for Cognitive Impairment Standardize Communication may be able to maintain this awareness.” and Assess Capacity with Hospital Staff LeBlanc echoes Gordon’s emphasis on — Screen all patients for cognitive — Communicate the patient’s education, “The truth of the matter is impairment upon admission.14,37 dementia diagnosis and all relevant that the training is at the heart of this — Refer patients who screen positive information necessary to provide program. And with the number of indi- for cognitive impairment for further care for the patient, during each viduals with dementia that we see coming evaluation by a dementia specialist patient handoff 36 (e.g., competency in the future, we are going to have a major or team.39-41 determination, assistance required problem in five years if we don’t start pre- — Assess patients with dementia for with activities of daily living, contact paring right now.” (For more information competency and capacity for decision information for the patient’s fam- on the Alzheimer’s/Dementia Hospital making.11,13,30-34,43 ily member or designated surrogate Wristband Project, go to www.common- decision maker). sensecaregiving.com.) Identify and Communicate with — Consider using visual indicators Surrogate Decision Makers that allow all hospital staff to read- RISK REDUCTION STRATEGIES — Identify existing surrogate decision ily identify patients with cognitive The following strategies are suggested makers by communicating with impairment and provide appropriate to hospitals seeking to improve care for patient family members and other care.37 patients with dementia and their family care providers and reviewing all CONCLUSION members: medical and legal documents.13 — Obtain informed consent from sur- Dementia is a common condition in Lay the Groundwork rogate decision makers for patients older adults that is often overlooked by — Assemble a multidisciplinary team deemed to lack competency or capac- clinicians and other hospital staff. Family to design improved care processes for ity for decision making.43 members have expressed frustration and patients with dementia. Suggested fear of adverse events that could result — Provide resources to help patients members include a physician and from this failure to recognize dementia and families seeking to create nurse with dementia expertise (i.e., and from obtaining inaccurate infor- advanced directives or designate specialization in geriatrics, neurol- mation or consent from patients with surrogate decision makers. (The ogy, or psychiatry), a social worker, dementia. The Authority has received American Bar Association Commis- and administrative staff.13,39-41 event reports through PA-PSRS and sion on Law and Aging44 and the information through direct communica- — Solicit input from patients with Alzheimer’s Association45 provide tion from family members of patients dementia and their family members a comprehensive array of resources with dementia to suggest that such events to identify challenges and guide to assist patients with dementia and do occur in Pennsylvania. Strategies to improvement efforts.37,42 their family members with these improve care and safeguard patients with — Form partnerships with dementia tasks.) dementia in the hospital include screen- advocacy groups, such as local chap- — Consult hospital legal counsel and ing for dementia, assessing competency ters of the Alzheimer’s Association, social work department for patients and capacity for decision making, identify- to identify resources and educational deemed to lack competency or capac- ing and communicating with surrogate materials available for patients, ity for decision making who do not decision makers, and standardizing their family members, and hospital have a designated surrogate decision communication of a patient’s dementia staff.13,37 maker.33,43-44 diagnosis with all hospital staff. — Educate hospital staff (both clinical — Engage family members or surro- and non-clinical), volunteers, and gate decision makers in developing Acknowledgments a plan of care for the patient with Edward Finley, BS, Pennsylvania Patient Safety first responders about dementia, Authority, contributed to the data collection including signs and symptoms, dementia.42 and analysis for this article. problems commonly faced in the — Ask family members to verify all healthcare setting, communication information provided by patients strategies, and resources available to with dementia whenever possible.37 support patients, their family mem- bers, and staff.13,37,41 Vol. 13, No. 1—March 2016 Pennsylvania Patient Safety Advisory Page 7 ©2016 Pennsylvania Patient Safety Authority R E V I E W S & A N A LY S E S NOTES 1. 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LEARNING OBJECTIVES SELF-ASSESSMENT QUESTIONS — Identify strategies to improve care for The following questions about this article may be useful for internal education and hospitalized patients with dementia. assessment. You may use the following examples or develop your own questions. — Identify factors impacting the recog- 1. All of the following are risk-reduction strategies that a hospital can use to improve nition and diagnosis of dementia. care for patients with dementia except: — Recall the predominant failure a. Solicit input from patients with dementia and their family members to identify modes for events involving patients challenges and guide improvement efforts. with dementia, as identified in b. Screen all patients for cognitive impairment upon admission. reports to the Pennsylvania Patient c. Limit communication of a patient’s dementia diagnosis to clinical staff only. Safety Authority. d. Obtain informed consent from surrogate decision makers for patients deemed to lack competency or capacity for decision making. — Recognize assessment findings that correlate with diagnostic criteria 2. Each of the following statements regarding dementia is false except: for dementia. a. The number of Pennsylvanians diagnosed with Alzheimer disease is expected to double between 2015 and 2025. — Distinguish between situations in b. Physicians may fail to recognize dementia in up to two-thirds of patients in the which it may or may not be necessary outpatient setting. to communicate with family mem- c. The Mini-Mental State Examination is recognized as the gold standard for bers or surrogate decision makers for screening and diagnosis of dementia. patients with dementia. d. The Health Insurance Portability and Accountability Act Privacy Rule prohib- its the sharing of patient diagnoses with non-clinical hospital staff. 3. Complete the following sentence: The failure mode most frequently identified in events reported to the Authority involving patients with dementia was ________. a. failure to recognize preexisting dementia b. failure to assess competence and decision-making capacity c. failure to identify a reliable historian or surrogate decision maker d. failure to contact a reliable historian or surrogate decision maker e. failure to communicate a patient’s dementia diagnosis, competence, and decision-making capacity Vol. 13, No. 1—March 2016 Pennsylvania Patient Safety Advisory Page 9 ©2016 Pennsylvania Patient Safety Authority R E V I E W S & A N A LY S E S An 87-year old man is admitted with anemia and a possible gastrointestinal bleed. During the history and physical, the patient tells you that he is a retired mechanical engineer and his wife passed away two months ago. When assessing his orientation, you notice he pauses a long time before telling you the date and then laughs it off, saying “all the years run together when you’re my age!” Later, you notice a calendar on the wall behind you, within the patient’s direct line of sight—but you dismiss this as a coincidence. When reviewing his medication list, the patient tells you that he takes an aspirin, a multivitamin, and a “water pill.” When asked about timing and dosages, he tells you that he doesn’t really have a schedule and that he doesn’t feel like he really needs “all these pills.” Later, when looking at notes in the electronic health record from his most recent hospital stay two months ago, you read that his wife passed away three years ago, and that he was discharged on 10 medications, including metoprolol and omeprazole. 4. In the above scenario, which combination of assessment findings is MOST suggestive of dementia? a. Age older than 85 and high level of education b. Age older than 85 and deficits in memory c. Deficits in memory and high level of education d. Deficits in memory and inability to manage his medication regimen A diagnosis of dementia is established for the patient described above, and he is deemed to have decision-making capacity; however, he asks that his son be included in any healthcare decisions. Three days into his hospital stay his hemoglobin drops to 7g/dL and the patient becomes lethargic and confused. The attending physician has decided that he requires an emergent transfusion because his hemoglobin continues to drop and he is symptomatic, but the patient is now unable to provide consent. The patient’s son cannot be reached by phone over multiple attempts. 5. Which of the following BEST describes the appropriate actions to be taken in this scenario? a. Transfuse the patient, despite the lack of consent. b. Delay the transfusion until the son can be reached to provide consent. c. Administer haloperidol to treat the patient’s superimposed delirium so that he can provide informed consent. d. Ask hospital legal counsel to contact the orphan’s court to establish temporary guardianship before transfusing the patient. On the day of discharge for the patient described in the preceding scenarios, the day shift nurse is prepared to review the discharge instructions with the patient and his son before the end of her shift; however, the son is running late. The patient has a friend visit- ing—an older woman who hasn’t visited before. Just as the day shift nurse finishes giving report to the evening shift nurse, the son calls the unit to say that he is downstairs with the car, and asks if his father can just be sent down to the lobby. 6. Which of the following BEST describes the appropriate actions to be taken by the day shift nurse? a. Review the discharge instructions with the patient and tell him to make sure he gives his son the paper copy. b. Review the discharge instructions with the patient’s friend and ask her to con- vey the instructions to the patient’s son. c. Send the patient down to the lobby and ask the patient transporter to give a paper copy of the discharge instructions to the patient’s son and to tell him to call you if he has any questions. d. Ask the patient’s son to come to the unit so that the day shift nurse can review the discharge instructions with the patient and his son. Page 10 Pennsylvania Patient Safety Advisory Vol. 13, No. 1—March 2016 ©2016 Pennsylvania Patient Safety Authority PENNSYLVANIA PATIENT SAFETY ADVISORY This article is reprinted from the Pennsylvania Patient Safety Advisory, Vol. 1 , No. — 201 . The Advisory is a publication of the Pennsylvania Patient Safety Authority, produced by ECRI Institute and ISMP under contract to the Authority. Copyright 201 by the Pennsylvania Patient Safety Authority. This publication may be reprinted and distributed without restriction, provided it is printed or distributed in its entirety and without alteration. Individual articles may be reprinted in their entirety and without alteration provided the source is clearly attributed. This publication is disseminated via e-mail. To subscribe, go to http://visitor.constantcontact.com/ d.jsp?m=1103390819542&p=oi. To see other articles or issues of the Advisory, visit our website at http://www.patientsafetyauthority.org. Click on “Patient Safety Advisories” in the left-hand menu bar. THE PENNSYLVANIA PATIENT SAFETY AUTHORITY AND ITS CONTRACTORS The Pennsylvania Patient Safety Authority is an independent state agency created by Act 13 of 2002, the Medical Care Availability and Reduction of Error (Mcare) Act. Consistent with Act 13, ECRI Institute, as contractor for the Authority, is issuing this publication to advise medical facilities of immediate changes that can be instituted to reduce Serious Events and Incidents. For more information about the Pennsylvania Patient Safety Authority, see the Authority’s website at http://www.patientsafetyauthority.org. An Independent Agency of the Commonwealth of Pennsylvania ECRI Institute, a nonprofit organization, dedicates itself to bringing the discipline of applied scientific research in healthcare to uncover the best approaches to improving patient care. As pioneers in this science for years, ECRI Institute marries experience and indepen- dence with the objectivity of evidence-based research. More than 5,000 healthcare organizations worldwide rely on ECRI Institute’s expertise in patient safety improvement, risk and quality management, and healthcare processes, devices, procedures and drug technology. The Institute for Safe Medication Practices (ISMP) is an independent, nonprofit organization dedicated solely to medication error prevention and safe medication use. ISMP provides recommendations for the safe use of medications to the healthcare community including healthcare professionals, government agencies, accrediting organizations, and consumers. ISMP’s efforts are built on a nonpunitive approach and systems-based solutions. Scan this code with your mobile device’s QR reader to subscribe to receive the Advisory for free.