The Inevitability of Reimagining Long-Term Care
2022; Elsevier BV; Volume: 23; Issue: 2 Linguagem: Inglês
10.1016/j.jamda.2021.12.032
ISSN1538-9375
AutoresSheryl Zimmerman, Matteo Cesari, Joseph E. Gaugler, Howard Gleckman, David C. Grabowski, Paul R. Katz, R. Tamara Konetzka, Katherine S. McGilton, Vincent Mor, Debra Saliba, Tetyana Shippee, Philip D. Sloane, Robyn Stone, Rachel M. Werner,
Tópico(s)Intergenerational Family Dynamics and Caregiving
ResumoLong-term care has been reimagined for as long as it's been recognized, which in part explains the multitude of options that emerged during the mid-20th century growth of formal long-term care support in the United States and other developed nations.1Rowles G.D. Teaster P.B. Long-Term Care in an Aging Society: Theory and Practice. 2016Google Scholar The articles in JAMDA's special issue on Reimagining Long-Term Care propose ways to further reimagine care going forward; this editorial calls the question as to whether we'll ever stop reimagining long-term care, and posits that we won't, for better and for worse. For better, because there's always room for improvement and consumer desires will continue to evolve. For worse, because the absence of a "system" of long-term care virtually ensures different visions between factions and partial progress at best. On that point, let's correct 2 erroneous beliefs. Long-term care—services delivered over a sustained period of time to persons with cognitive or functional limitations—is not a "continuum" nor a "system." As but a few examples, if it were a continuum, we'd expect the prevalence of functional impairment to be less among persons receiving adult day services than among persons in assisted living, when in fact the percentage of persons with 3 or more limitations in activities of daily living is virtually identical (64% and 61%, respectively).2Lendon J.P. Singh P. Adult Day Services Center Participant Characteristics: United States, 2018. NCHS Data Brief, no 411.2021Google Scholar,3Caffrey C. Sengupta M. Melekin A. Residential Care Community Resident Characteristics: United States, 2018. NCHS Data Brief, no 404.2021Crossref Google Scholar Or, we'd expect the percentage of persons with arthritis, diabetes, heart disease, or hypertension to be lower among home health agency users than among assisted living or nursing home residents, which it isn't.4Harris-Kojetin L. Sengupta M. Lendon J.P. et al.Long-term care providers and services users in the United States, 2015–2016. National Center for Health Statistics.Vital Health Stat. 2019; 3: 43Google Scholar And if long-term care were a system—by definition, "a set of things working together as parts of a mechanism or an interconnecting network"5Oxford University PressEncyclopedia.com.https://www.encyclopedia.com/medicine/anatomy-and-physiology/anatomy-and-physiology/system#:∼:text=a%20set%20of%20connected%20things,%E2%88%8E%20PhysiolDate accessed: December 20, 2021Google Scholar—we'd not have the situation in which hospital costs to Medicare and nursing home costs to Medicaid were on a different ledger, or that specific models of care would be needed to improve and reduce transitions across care settings.6Chong E. Zhu B. Tan H. et al.Emergency Department Interventions for Frailty (EDIFY): front-door geriatric care can reduce acute admissions.J Am Med Dir Assoc. 2021; 22: 923-928Abstract Full Text Full Text PDF PubMed Scopus (12) Google Scholar, 7Gardner R.L. Pelland K. Youssef R. et al.Reducing hospital readmissions through a skilled nursing facility discharge Intervention: a pragmatic trial.J Am Med Dir Assoc. 2020; 21: 508-512Abstract Full Text Full Text PDF PubMed Scopus (9) Google Scholar, 8Robert B. Sun A.H. Sinden D. Spruin S. Hsu A.T. A case-control study of the Sub-Acute care for Frail Elderly (SAFE) unit on hospital readmission, emergency department visits and continuity of post-discharge care.J Am Med Dir Assoc. 2021; 22: 544-550Abstract Full Text Full Text PDF PubMed Scopus (3) Google Scholar, 9Welberry H.J. Brodaty H. Hsu B. Barbieri S. Jorm L.R. Impact of prior home care on length of stay in residential care for Australians with dementia.J Am Med Dir Assoc. 2020; 21: 843-850Abstract Full Text Full Text PDF PubMed Scopus (9) Google Scholar, 10Song J. Zolnoori M. McDonald M.V. et al.Factors associated with timing of the start-of-care nursing visits in home health care.J Am Med Dir Assoc. 2021; 22: 2358-2365Abstract Full Text Full Text PDF PubMed Scopus (6) Google Scholar, 11Manis D.R. Rahim A. Poss J.W. et al.Association between dementia care programs in assisted living facilities and transitions to nursing homes in Ontario, Canada: a population-based cohort study.J Am Med Dir Assoc. 2021; 22: 2115-2120Abstract Full Text Full Text PDF PubMed Scopus (4) Google Scholar, 12Moyo P. Loomer L. Teno J.M. et al.Effect of a video-assisted advance care planning intervention on end-of-life health care transitions among long-stay nursing home residents.https://doi.org/10.1016/j.jamda.2021.09.014Google Scholar The lack of a system makes long-term care incredibly complex. Attesting to the complexity inherent in long-term care, each article in JAMDA's special issue highlights a different topic, yet every article points to the interrelatedness of all topics. This editorial groups the articles into 5 areas and notes interrelationships among them: workforce; societal issues; models of long-term care; financing, payment, and regulations; and long-term care services. Today, one of the topics most requiring reimagination is the long-term care workforce. We didn't need COVID-19 to highlight historic issues related to burnout, understaffing, and the low regard bestowed on the long-term care workforce, but it certainly did that.13White E.M. Wetle T.F. Reddy A. Baier R.R. Front-line nursing home staff experiences during the COVID-19 pandemic.J Am Med Dir Assoc. 2021; 22: 199-203Abstract Full Text Full Text PDF PubMed Scopus (182) Google Scholar In this issue of JAMDA, the article focusing on transforming direct care notes that the recent unprecedented federal and state attention on long-term care makes the time ripe for a national direct care workforce strategy, which could perhaps be incorporated into federal funding and accountability mechanisms.14Scales K. Transforming direct care jobs, reimagining long-term services and supports.J Am Med Dir Assoc. 2022; 23: 207-213Abstract Full Text Full Text PDF PubMed Scopus (8) Google Scholar Beyond nursing assistants, there is need to revisit the availability of nurses, whose capacity could be augmented by employing foreign-educated nurses, albeit requiring an eye toward equity and necessary preceptorship.15Thompson R.A. Corazzini K.N. Konrad T. et al.Registered nurse migration to the US and the impact on long-term care.J Am Med Dir Assoc. 2022; 23: 315-317Abstract Full Text Full Text PDF Scopus (1) Google Scholar Going one step further, another article stresses that the future includes a more decisive role for nurse practitioners but notes that changes are needed to restrictive practice acts and that better differentiation is needed between their responsibilities and those of physicians.16McGilton K.S. Bowers B.J. Resnick B. The future includes nurse practitioner models of care in the long-term care sector.J Am Med Dir Assoc. 2022; 23: 197-200Abstract Full Text Full Text PDF Scopus (5) Google Scholar The role of physicians is also reimagined in an article on assisted living, proposing structured medical care led by a medical director, while also noting related controversies such as implications for continuity of care.17Katz P.R. Howd S. Rust C. Reimagining medical care in assisted living.J Am Med Dir Assoc. 2022; 23: 201-203Abstract Full Text Full Text PDF PubMed Scopus (6) Google Scholar Reimagining the long-term care workforce would not be complete without addressing technology and families; the critical role of both came to the forefront during the pandemic. A pragmatic innovation presents experiences using a robotic device to enhance provider presence in nursing homes; it limited staff burden but has cost implications if it is to be routinely incorporated into care going forward.18Manley N.A. Boron J.B. Shade M.Y. et al.A robotic device to enhance nursing home provider telepresence during and after the COVID-19 pandemic.J Am Med Dir Assoc. 2022; 23: 311-314Abstract Full Text Full Text PDF Scopus (1) Google Scholar Regarding families, evidence recommends that residential long-term care embrace a more family-centric perspective, including involving families when developing organizational governance policies.19Gaugler J.E. Mitchell L.L. Re-imagining family involvement in residential long-term care.J Am Med Dir Assoc. 2022; 23: 235-240Abstract Full Text Full Text PDF Scopus (14) Google Scholar There is also a need to maintain focus on respite for family who provide care at home, embracing new models borne out of COVID-19 such as supervision of care recipients by offsite respite providers via an interactive computer screen.20Utz R.L. Caregiver respite: an essential component of home and community-based long-term care.J Am Med Dir Assoc. 2022; 23: 320-321Abstract Full Text Full Text PDF Scopus (4) Google Scholar Both articles envision a more empowered role for families, recognizing their critical role especially in light of staffing shortages. Three articles speak to societal issues inherent in long-term care that require attention. A special article addressing systemic racism presents 7 recommendations to address racial and ethnic disparities in long-term care based on existing evidence, addressing topics ranging from needs of family caregivers, to redesigning pay for performance programs, to culture change.21Shippee T.P. Fabius C.D. Fashaw-Walters S. et al.Evidence for action: addressing systemic racism across long-term services and supports.J Am Med Dir Assoc. 2022; 23: 214-219Abstract Full Text Full Text PDF PubMed Scopus (17) Google Scholar In a different context, culture change is addressed in an editorial stressing the need to build trust in post-acute and long-term care, tasking medical care providers to help the field move away from a fear-based work culture.22Holahan T.J. Eber L.B. Vigne E. The Clinical Practice Steering Committee of AMDA. Building trust in post-acute and long-term care: strategies for sustainable change.J Am Med Dir Assoc. 2022; 23: 193-196Abstract Full Text Full Text PDF Scopus (3) Google Scholar In yet a different context, a special article goes beyond the concept of a "safety culture" to a "just culture" and provides guidance for organizations to focus not only on outcomes but also on behavioral choices; in so doing, changes are needed both to the culture of the long-term care setting and to the survey process.23Gaur S. Kumar R. Gillespie S.M. Jump R.L.P. Integrating principles of safety culture and just culture into nursing homes: lessons from the pandemic.J Am Med Dir Assoc. 2022; 23: 241-246Abstract Full Text Full Text PDF Scopus (4) Google Scholar There is much to reimagine based on international models of long-term care, as described in 7 articles in JAMDA's special issue. Four articles provide broad recommendations or emerging models of long-term care. One is a World Health Organization global expert consensus report recommending 50 broad-reaching long-term care services.24Perracini M.R. Arias-Casais N. Thiyagarajan J.A. et al.A recommended package of long-term care services to promote healthy ageing based on a WHO global expert consensus study.J Am Med Dir Assoc. 2022; 23: 297-303Abstract Full Text Full Text PDF Scopus (6) Google Scholar Another describes Costa Rica's new national long-term care service program that is expected to inform the efforts of other middle-income countries.25Matus-López M. Chaverri A. Progress toward long-term care protection in Latin America. A national long-term care system in Costa Rica.J Am Med Dir Assoc. 2022; 23: 266-271Abstract Full Text Full Text PDF Scopus (4) Google Scholar A third article describes a Dutch network to treat residents with any of 7 rare conditions for whom there is a need to improve care, collaboration, and competencies (eg, Huntington disease, Korsakoff syndrome, mental and physical multimorbidity),26Koopmans R.T.C.M. Leerink B. Festen D.A.M. Dutch long-term care in transition: a guide for other countries.J Am Med Dir Assoc. 2022; 23: 204-206Abstract Full Text Full Text PDF Scopus (2) Google Scholar and a fourth article describes the Netherlands' efforts to address the needs of persons with young-onset dementia.27Bakker C. Verboom M. Koopmans R. Reimagining post-diagnostic care and support in young-onset dementia.J Am Med Dir Assoc. 2022; 23: 261-265Abstract Full Text Full Text PDF Scopus (3) Google Scholar In addition, 3 evidence-based international articles speak to collaborative models that have promise for the future: a generalist-specialist collaboration with elderly care physicians embedded in primary care28Vrijmoeth T. Wassenaar A. Koopmans R.T.C.M. et al.Generalist-specialist collaboration in primary care for frail older persons: a promising model for the future.J Am Med Dir Assoc. 2022; 23: 288-296Abstract Full Text Full Text PDF Scopus (2) Google Scholar and 2 types of collaboration between long-term care settings and hospitals.29Wong B.M. Rotteau L. Feldman S. et al.A novel collaborative care program to augment nursing home care during and after the COVID-19 pandemic.J Am Med Dir Assoc. 2022; 23: 304-307Abstract Full Text Full Text PDF PubMed Scopus (4) Google Scholar,30Mateos-Nozal J. Pérez-Panizo N. Zárate-Sáez C.M. et al.Proactive geriatric co-management of nursing home patients by a new hospital-based liaison geriatric unit: a new model for the future.J Am Med Dir Assoc. 2022; 23: 308-310Abstract Full Text Full Text PDF Scopus (5) Google Scholar Three articles address the future of 2 consequential models of care in the United States—post-acute care and assisted living. An editorial questions whether a nursing home can and should provide both post-acute and long-term care, based on the challenges of providing optimal care to very different populations, disparities in care, and a shrinking market.31Sloane P.D. The uncertain future of nursing home post-acute care.J Am Med Dir Assoc. 2022; 23: 190-192Abstract Full Text Full Text PDF PubMed Scopus (4) Google Scholar A special article speaks to tensions that have affected the very fabric of assisted living, noting that today's assisted living is not as intended and must be reimagined, suggesting numerous potential solutions to move toward that future.32Zimmerman S. Carder P. Schwartz L. et al.The imperative to reimagine assisted living.J Am Med Dir Assoc. 2022; 23: 225-234Abstract Full Text Full Text PDF PubMed Scopus (32) Google Scholar A third article describes a quality improvement collaborative that could serve as a model to guide assisted living moving forward.33Ramly E. Parks R. Fishler T. et al.Implementing large-scale data-driven quality improvement in assisted living.J Am Med Dir Assoc. 2022; 23: 280-287Abstract Full Text Full Text PDF PubMed Scopus (3) Google Scholar Although explicit or implicit in virtually every article related to workforce, societal issues, models, and services, 2 articles in JAMDA's special issue focus squarely on financing, payment, and regulation. The first addresses the current patchwork, variability, and insufficiency of funding, and the resulting barriers to care, quality, equity, and efficient allocation of resources; in reimagining, it envisions a new federal long-term care benefit and its essential features, as well as related tradeoffs and challenges.34Werner R.M. Konetzka R.T. Reimagining financing and payment of long-term care.J Am Med Dir Assoc. 2022; 23: 220-224Abstract Full Text Full Text PDF Scopus (5) Google Scholar In a different vein, a nationwide study provides a new vision for regulations related to architectural design, calling for more single-occupancy rooms and more spacious living areas after finding associations between residential density and COVID-19 cases and deaths.35Zhu X. Lee H. Sang H. et al.Nursing home design and covid-19: implications for guidelines and regulation.J Am Med Dir Assoc. 2022; 23: 272-279Abstract Full Text Full Text PDF Scopus (10) Google Scholar COVID-19 will abate with time, but concern regarding infection transmission in long-term care will be never-ending. Four articles speak about the type of services provided in residential long-term care. Consistent with the point above, a letter stresses the ongoing need to focus on infection control,36Baker N.R. Dunn D. Greenberg S.A. Shaughnessy M. Infection control in long-term care: an old problem and a new priority.J Am Med Dir Assoc. 2022; 23: 321-322Abstract Full Text Full Text PDF Scopus (2) Google Scholar and another calls to focus more closely on relocations within long-term care.37De Boer B. Caljouw M.A.A. Landeweer E.G.M. et al.The need to consider relocations WITHIN long-term care.J Am Med Dir Assoc. 2022; 23: 318-320Abstract Full Text Full Text PDF Scopus (3) Google Scholar Two special articles delve more deeply into care itself. One addresses recommendations for nutrition care and mealtimes, identifying which recommendations are most feasible and the related need for funding, policy, and practice standards.38Keller H.H. Syed S. Dakkak H. et al.Re-imagining nutrition care and mealtimes in long-term care.J Am Med Dir Assoc. 2022; 23: 253-260Abstract Full Text Full Text PDF Scopus (4) Google Scholar The second equates high-quality nursing home care with palliative care, also noting the critical role of payment policies and regulations.39Ersek M. Unroe K.T. Carpenter J.G. et al.High quality nursing home and palliative care - one and the same.J Am Med Dir Assoc. 2022; 23: 247-252Abstract Full Text Full Text PDF Scopus (9) Google Scholar All of the articles in JAMDA's special issue on reimagining long-term care draw on literature and research to support their recommended vision for the future. That said, virtually every article also speaks to the need for additional research to guide implementation and examine outcomes, including but not limited to determining the impact of wage increases, training, and models of staff supervision14Scales K. Transforming direct care jobs, reimagining long-term services and supports.J Am Med Dir Assoc. 2022; 23: 207-213Abstract Full Text Full Text PDF PubMed Scopus (8) Google Scholar; considering how best to implement a "just culture"23Gaur S. Kumar R. Gillespie S.M. Jump R.L.P. Integrating principles of safety culture and just culture into nursing homes: lessons from the pandemic.J Am Med Dir Assoc. 2022; 23: 241-246Abstract Full Text Full Text PDF Scopus (4) Google Scholar; developing and implementing new models of assisted living and related regulatory requirements, financial incentives, and access32Zimmerman S. Carder P. Schwartz L. et al.The imperative to reimagine assisted living.J Am Med Dir Assoc. 2022; 23: 225-234Abstract Full Text Full Text PDF PubMed Scopus (32) Google Scholar; examining the costs associated with federal long-term care policy34Werner R.M. Konetzka R.T. Reimagining financing and payment of long-term care.J Am Med Dir Assoc. 2022; 23: 220-224Abstract Full Text Full Text PDF Scopus (5) Google Scholar; and developing valid and reliable measures to evaluate the quality of and set benchmarks for palliative care.39Ersek M. Unroe K.T. Carpenter J.G. et al.High quality nursing home and palliative care - one and the same.J Am Med Dir Assoc. 2022; 23: 247-252Abstract Full Text Full Text PDF Scopus (9) Google Scholar More than 30 years ago, Bob and Rosalie Kane wrote, "Given that our present long-term care is faulted on the grounds of both quality and cost (public and private), little will be lost by trying a new approach."40Kane R.L. Kane R.A. A nursing home in your future?.N Engl J Med. 1991; 324: 627-629Crossref PubMed Scopus (14) Google Scholar(p628) That statement remains true today. The articles included in the special issue of JAMDA make clear that reimagining long-term care implicates complex interrelationships between the workforce, societal issues, models of long-term care, financing, payment, regulations, and services. On the one hand, those interrelationships make it challenging to effect change; on the other hand, change in one area can have a domino effect in improving outcomes as long as none of the dominoes impede progress. Everyone wants long-term care to be reimagined toward a better future, but like so many other issues affecting the world, achieving that change is politicized. For the foreseeable future, it may be best to consider that the reimagined future set forth in the special issue of JAMDA is an aspirational future. And, when changes are effected, they will likely be incremental, given the lack of an existing system of long-term care. Perhaps the more fundamental reason that we'll forever be reimagining long-term care is that care and outcomes can never be optimal regardless our best efforts. Ultimately, care recipients face significant physical and/or cognitive challenges, have often lost their closest partner owing to death, and may have complex conditions and symptoms with limited life expectancy. Given these realities of the population served, how can we not want to reimagine the impossible? And so, we'll forever be swimming upstream against a current of disability and loneliness, wanting to achieve what cannot be fully achieved and striving to create a system that better merges science, caring, and resources. Within the next few months, the National Academies of Sciences, Engineering, and Medicine is expected to release recommendations to improve the quality of nursing home care, presumably with relevance to other long-term care settings. It is hoped that their report and the articles in the special issue of JAMDA combine with the renewed national focus on the future of long-term care to spur constructive change.
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