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Letters to the Editors
Improving Geriatric Emergency Care for Persons With Alzheimer Disease
The opening paragraph of the AGS Viewpoint article1 in the September/October 2017 issue of Annals of Long-Term Care: Clinical Care and Aging® states, “Four national medical societies and nine leading health systems recently announced that they have established a new national Geriatric Emergency Department Collaborative (GEDC) to help improve emergency care for our nation’s older adults.” Toward the end of that article, the American Geriatrics Society (AGS) notes, “The GEDC will continue to add more health centers and partners, contributing to an alliance of national stakeholders who will help promote national adoption of geriatric emergency care best practices.”
This is wonderful news, but I see no mention of the GEDC’s real stakeholders: geriatric patients. To improve hospital emergency department (ED) practices for older adults, the GEDC may want to consult with those who have been in EDs, such as those caring for and speaking for older adults. And with the rapidly increasing number of older adults, who are also living longer with Alzheimer disease (AD) dementia, special attention is needed for this population. The GEDC should consult with current and former caregivers of persons with dementia who have direct experience with ED practices and often serve as patients’ spokespersons. As a former AD caregiver whose late wife was a patient in several EDs, I would suggest the following:
Treat patients with AD as a higher triage priority.
Some of my wife’s ED visits lasted more than 9 hours. She would begin sundowning as time went on and became increasingly confused, anxious, and aggressive. I continued to remind ED personnel that my wife had not eaten or taken her anti-anxiety medication in many hours, but each time I received the same response: “Until her test results are analyzed by the doctors, she may not eat or take any medication.” That would have been fine had she been a high priority, but she was a low priority.
On too many ED visits, my wife sat there for well over an hour just waiting for blood to be drawn then had to wait as long as 2 hours for doctors to analyze the blood work. It was the same with radiographs or other testing—long waits for tests and long waits for results. During all of this time, I served as a human bed restraint to keep my wife on the gurney.
I understand the wisdom of ED policies dictating withholding a patient’s medication and food until testing has been completed. However, withholding anxiety medication and food for 9 hours or more for a patient with AD is, in my opinion, almost medical malpractice. My wife was screaming louder and louder, repeatedly ripping painful IV needles out of her arm, constantly trying to get up, trying to remove her uncomfortable diaper, and refusing to use a bedpan and soiling her clothing. We waited and waited for tests to be ordered or analyzed so that she could be admitted or discharged. Only afterward would she be given medication and food.
Direct all questions to the caregiver.
If a caregiver is present whenever a person with AD comes into the ED, directing medically specific questions to the caregiver rather than the patient is much more helpful. Often, I would tell medical staff that my wife had moderate- or late-stage AD and that I was her caregiver, yet doctors continued to ignore me while wasting valuable time asking my wife questions she could not possibly understand or answer. Asking patients for reliable information is fruitless if they are in the moderate or severe stages of AD. In addition, I was completely familiar with my wife’s medication, her medical history, etc, but too often I was told in no uncertain terms to remain quiet.
Asking my wife what part of her body hurt, or to describe her pain on a 1 to 10 scale, was both ridiculous and fruitless. I told doctors that she did not understand anything they were saying to her, but doctors continued asking her one question after another. Doctors should consider simply placing their hands gently on different parts of the patient’s body; the patient with AD will usually let the doctor know very clearly where it hurts.
Provide dementia training for all doctors, nurses, and medical technicians.
As the number of older adults with dementia grows, supplemental training on dementia care for all ED providers would allow them to better understand how a person with AD experiences the ED. Because of her AD symptoms, my wife was thoroughly confused well before arriving in the ED, but once she got there she became even more confused and also fearful. She was in a totally unfamiliar setting with strangers asking her questions she did not understand and saying things she could not comprehend. She was quickly undressed by a total stranger, even her absorbent underwear were removed, and she was placed in a diaper and paper gown. That bothered her tremendously. Then she was forced to lie down on an uncomfortable gurney, stare at extremely bright overhead lights, listen to very loud and strange machine sounds, and watch strangers walking all around her and poking her all over while needles were painfully placed in her arms. Her chronic back pain made her very uncomfortable on that hard gurney. The combination of all of these environmental factors made her terrified, and she began screaming and crying.
I would be willing to bet that if the GEDC approached such national organizations as the Alzheimer’s Association or the Alzheimer’s Foundation of America, these organizations would be able to design a program and provide knowledgeable staff to bring effective in-service training to medical personnel. A 2010 study on hospitals’ approach to patients with dementia, “Dementia-Friendly Hospitals: Care Not Crisis,”2 supported in part by a grant from the National Institutes of Health, noted that “The greatest unmet need was in-service training to increase the staff’s understanding of dementia and strategies to improve the hospital environment for the patient with dementia.” The study found that staff themselves recognized that they needed to improve their communication skills with patients with dementia.
Current and former AD caregivers can provide valuable insights based on experiences with their loved ones and patients in EDs. I am so pleased to read that the GEDC hopes to improve current practices for AD patients in hospital EDs. To truly gain a better understanding of how current practices may be improved, however, GEDC should ask for suggestions from AD caregivers who have dealt with or are dealing with current ED practices. Current and former AD caregivers can provide valuable insights based on their actual experiences with their loved ones in hospital EDs, offering a unique perspective that cannot be gained from anyone else.
Allan S Vann, EdD
Dementia care advocate
Former spouse caregiver
References
1. American Geriatrics Society. Four national medical societies and nine leading health systems collaborate to improve geriatric emergency care. Ann Longterm Care. 2017;25(5):13.
2. Galvin JE, Kuntemeier B, Al-Hammadi N, Germino J, Murphy-White M, McGillick J. “Dementia-friendly hospitals: care not crisis” an educational program designed to improve the care of the hospitalized patient with dementia. Alzheimer Dis Assoc Disord. 2010;24(4):372-379.
A response from the Geriatric Emergency Department Collaborative (GEDC)
As leaders and interprofessional advisors for the GEDC, we commend the author for reinforcing one of the hallmarks of geriatrics expertise and of the GEDC: a person-centered approach to care.1,2 The GEDC aspires to improve the process and outcomes of older adult emergency care in addition to the patient and caregiver experiences of care. As the author rightly notes, that includes forging a better sensitivity for older adults and caregivers with unique needs, ensuring that caregivers are included in care planning in the ED and beyond, and building a better system for training health care professionals in best practices for a range of older patients and caregivers, particularly those living with AD.
People living with dementia are among the most vulnerable individuals in emergencies. Their experiences represent a litmus test for creating efficient and compassionate health care systems. If high-quality care can be delivered to people living with dementia and their families during times of acute illness or injury, access to efficient ED care will improve for all populations. Importantly, geriatric emergency medicine had to learn to crawl before walking, which means the specialty needed first to acknowledge that, historically, dementia was usually unrecognized because case findings were rare and screening instruments untested.3,4 Of course, screening is unnecessary when family members inform providers of a person’s dementia diagnosis and baseline cognitive capacity.
As part of the GEDC infrastructure, we established a Geriatric Emergency Medicine Advisory Council earlier this year not only to lay the framework for our plans with initial health system partners, but also to help shape a broader alliance of stakeholders to promote improved emergency care for us all as we age. The voice and perspective of the patient are contributed by stakeholder organizations such as Patient and Family Centered Care Partners, which is active and essential in our work. Caregivers and patients have presented their experiences at GEDC conferences and boot camps through speaker panels, video testimonies, and case discussions. We need this representation to ensure that our best practices reflect the lives (both real and ideal) of older people and their caregivers who benefit from enhanced ED care. As researchers and educators, we value further still what these perspectives provide as we develop training materials and a repository of data for changing clinical practice from the textbook to the bedside. The geriatric ED guidelines developed in 2013 and endorsed by the American College of Emergency Physicians, the American Geriatrics Society, the Emergency Nurses Association, and the Society for Academic Emergency Medicine offer a compelling case in point.5 Among several salient examples, the guidelines provide evidence-based and feasible cognitive screening tools for older adults with protocols to ensure more geriatric-focused evaluations for current and future ED or other care visits.5
Beyond the Geriatric Medicine Advisory Council, we also have worked to catalyze a culture of person-centered care across the GEDC. The institutional, organizational, and individual partners with whom we already work—as well as those we hope to recruit—have demonstrated a unique sensitivity to patient perspective. Many have their own important links to patient advocacy champions, and all have multiple stakeholders, including patients and administrators, who are aware of the high-priority institutional need for improved care of older people. They all now are working to ensure those voices are integrated into their own health system’s GEDC-based plans. Those attributes must remain at the heart of who we are and what we do through the work of the GEDC nationwide.
Proactive health systems such as our GEDC partners know that the future of health care requires bold approaches to (1) valuing older adults as individuals, (2) addressing our unique needs as we age, and (3) providing the best care and support possible. Regardless of the space, place, or context for delivering that care, it can only begin by recognizing patients as people, including and perhaps most especially when those people live with multifaceted conditions such as AD and dementia. The reward for that person-centered approach is a health system that can be responsive to individual needs and priorities, ideally while also helping to improve our care quality and reduce our care costs.6
That promise notwithstanding, the devil remains in the details. The National Academy of Medicine, formerly the Institute of Medicine, estimates a 17-year delay before just 14% of research or guidelines are incorporated into routine bedside care.7 GEDC leaders developed geriatric core competencies for emergency medicine trainees that now appear on credentialing examinations, but research and traditional medical education alone are inadequate strategies to improve care.8,9 The GEDC approach incorporates implementation science to accelerate the uptake of the geriatric ED guidelines by health care systems, an approach that depends upon representative patient and family voices.10,11 AD advocacy groups have already expressed interest in helping to improve emergency care as a broad strategic priority, but linking that enthusiasm institutionally to patient perspective individually is a challenge not limited to the ED. Engaging patients and families as sustained partners in the GEDC with the deployment of geriatric emergency care models remains a core objective—one we continue to explore as we bring the principles of person- and family-centered care into the GEDC design.
There are, indeed, as many questions as answers in this early stage of our work, but coalescing experts (and we count patients and caregivers among that cohort) is an important first step, and one we are heartened to see expressed so thoughtfully by a reader vested in our efforts.
Chapel Hill School of Medicine,
at Mount Sinai,
References
1. American Geriatrics Society. Four national medical societies and nine leading health systems collaborate to improve geriatric emergency care. Ann Longterm Care. 2017;25(5):13.
2. American Geriatrics Society Expert Panel on Person-Centered Care. Person-centered care: a definition and essential elements. J Am Geriatr Soc. 2016;64(1):15-18.
3. Carpenter CR, Griffey RT, Stark S, Coopersmith CM, Gage BF. Physician and nurse acceptance of technicians to screen for geriatric syndromes in the emergency department. West J Emerg Med. 2011;12(4):489-495.
4. Carpenter CR, Bassett ER, Fischer GM, Shirshekan J, Galvin JE, Morris JC. Four sensitive screening tools to detect cognitive dysfunction in geriatric emergency department patients: Brief Alzheimer’s Screen, Short Blessed Test, Ottawa 3DY, and the caregiver-completed AD8. Acad Emerg Med. 2011;18(4):374-384.
5. American College of Emergency Physicians, American Geriatrics Society, Emergency Nurses Association, Society for Academic Emergency Medicine. Geriatric emergency department guidelines. https://www.acep.org/WorkArea/linkit.aspx?LinkIdentifier=id&ItemID=95365. Published 2013. Accessed January 22, 2018.
6. Hwang U, Shah MN, Han JH, Carpenter CR, Siu AL, Adams JG. Transforming emergency care for older adults. Health Aff (Millwood). 2013;32(12):2116-2121.
7. Balas EA. From appropriate care to evidence-based medicine. Pediatr Ann. 1998;27(9):581-584.
8. Hogan TM, Losman ED, Carpenter CR, et al. Development of geriatric competencies for emergency medicine residents using an expert consensus process. Acad Emerg Med. 2010;7(3):316-324.
9. Neta G, Glasgow RE, Carpenter CR, et al. A framework for enhancing the value of research for dissemination and implementation. Am J Public Health. 2015;105(1):49-57.
10. Carpenter CR, Pinnock H. StaRI aims to overcome knowledge translation inertia: the Standards for Reporting Implementation Studies guidelines. J Am Geriatr Soc. 2017;65(8):1664-1666.
11. Hogan TM, Richmond NL, Carpenter CR, et al. Shared decision making to improve the emergency care of older adults: a research agenda. Acad Emerg Med. 2016;23(12):1368-1379.
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