Integrating Primary Care and Public Health for Advance Care Planning

ABSTRACT

The COVID-19 pandemic has highlighted the need for, and barriers to, a comprehensive plan to implement advance care planning (ACP) in the United States. The overwhelming of health care infrastructure, coupled with pandemic restrictions at many health care facilities, curtailed interactions that give clinicians the ability to elicit patient preferences and the capacity to interact with families. Although the pandemic facilitated many policy changes related to care delivery, even allowing telehealth ACP, more transformative innovation must accompany these adjustments to both counteract pandemic-driven obstacles and address existing barriers to ACP moving forward. To address these and future needs, we suggest a shared public health–primary care ACP partnership (Public-Primary ACP) for adult patients. Although such an approach presents steep implementation barriers, similar partnerships, such as newborn screening (NBS) programs, have succeeded by dreaming big at the outset and evolving over decades. Leveraging experience from this program, we present a Public-Primary ACP implementation road map following a 5-step process paralleling NBS programs that includes prework, screening, follow-up, assessment and management, and program evaluation. The ongoing pandemic has demonstrated the need to think beyond a traditional brick-and-mortar approach to medical care and highlights the importance of adapting to meet patients and families in the community. Public-Primary ACP proposes processes that will require significant contextual modifications throughout implementation but are worth considering now in response to ongoing ACP health care system failures. If successful, Public-Primary ACP may promote patient preference–aligned care in a postpandemic health care system, albeit at a significant cost.

Am J Accountable Care. 2022;10(1):31-37. https://doi.org/10.37765/ajac.2022.88850

SARS-CoV-2 and the ensuing global pandemic of COVID-19 represent one of the most significant public health emergencies of the last century.¹ Although COVID-19 vaccines provide hope for pandemic mitigation, the slow uptake of vaccines, coupled with the emergence of highly contagious SARS-CoV-2 variants such as Delta and Omicron, forebode a prolonged pandemic recovery.^2,3 Pandemic-driven morbidity and mortality rates have underscored the need for advance care planning (ACP), especially for older adults and patients living with chronic disease.^4,5 These pandemic disruptions provide an opportunity to drastically reenvision how ACP can be successfully delivered. Ideally, ACP promotes preference-aligned medical care during serious illness through an anticipatory process that helps patients and their surrogates identify and communicate health care preferences.⁶ However, despite a quarter-century of investigation and intervention, translation of ACP to clinical practice has yielded uneven results.⁷

Inadequacies in ACP predate the COVID-19 pandemic. At least one-third of dying hospitalized patients receive medical care that is not aligned with personal preference.⁸ Those least likely to receive ACP are at highest risk for COVID-19 infection and complications: older adults with complex chronic disease, underrepresented racial and ethnic groups, individuals living in poverty, and those with lower educational attainment.^9-11 Pandemic-related clinician shortages and limitations to usual patient care¹² risk further exacerbation of ACP inadequacies and disparities. Systematic delivery of high-quality ACP, during and beyond the COVID-19 pandemic, requires serious consideration of paradigm shifts from existing models.

The restructuring of health care delivery processes as part of the COVID-19 response provides opportunities to envision foundational ACP transformation. At the peak of the pandemic in the United States, up to 2 million patients daily were receiving COVID-19 testing,¹³ delivered by a combination of public health, clinical, and commercial entities. Although primary care providers are a critical component of COVID-19 testing workflows, direct provider-patient visits occur only in a small proportion of these interactions, often driven by illness acuity or other patient needs.¹⁴ Local public health departments provision COVID-19 testing and follow-up for case investigation and contact tracing, markedly increasing the frequency of health care interactions with community members.¹⁵ These shifts in health care delivery present new prospects for coordination between frontline public health and primary care entities for ACP. The pandemic has not only highlighted a need for reforming ACP but also provides new approaches to drive transformation. We present a public health–primary care ACP model (Public-Primary ACP) as one compelling mechanism for transformation. Such partnerships are successfully used elsewhere, such as for newborn screening (NBS).¹⁶ This new ACP delivery model can help address specific challenges presented by the COVID-19 pandemic while filling long-standing gaps in ACP for a more patient- and family-centered health care future.

NBS Programs: History and Workflows

NBS programs epitomize primary care–public health partnership in clinical care coordination, handoffs, and delivery. These programs have formally existed for more than 60 years and currently provide ubiquitous screening to newborns for genetic, endocrine, and metabolic disorders 24 hours after birth.¹⁷ Initial adoption of newborn screening, however, was a gradual process. The discovery in the 1960s of a blood test for the detection of phenylketonuria (PKU) in newborns demonstrated the scientific and public health potential of NBS. Much of the medical community met NBS with great skepticism, initially rejecting efforts to systematically implement this test, arguing that PKU was too rare to warrant such attention.¹⁸

Momentum for the systematic adoption of PKU infant screening grew as advocates, including parents of children with metabolic disease, drove changes in governmental policy and medical practice after advances in laboratory technology opened the door for eventual clinical feasibility of screening.¹⁷ These advocacy efforts prompted the American Academy of Pediatrics (AAP) to endorse PKU screening for newborns in 1965.¹⁸ State health departments subsequently began implementing formal screening programs through testing protocol development, funding mechanism identification, and laboratory infrastructure establishment.¹⁸ As additional tests were developed, state NBS panels expanded, increasing the early detection of congenital disease to reduce disease-related morbidity and mortality.¹⁷ Despite the initial skepticism and implausibility facing NBS, the program experienced successes unimaginable to its initial advocates.

As of 2018, all states provide universal screening for at least 35 conditions, including neonatal hypothyroidism, PKU, and cystic fibrosis.¹⁹ NBS programs now screen greater than 99.9% of the 4 million infants born each year, detecting congenital metabolic or genetic conditions in an estimated 12,500 infants annually.²⁰ NBS programs integrate laboratory testing with parent/provider education, follow-up, diagnosis, treatment, and evaluation.²¹ In 2006, the AAP outlined a framework highlighting key components of newborn screening: (1) prework, (2) screening, (3) follow-up, (4) assessment and management, and (5) program evaluation (Figure).¹⁶ Each step requires complex care coordination between primary care pediatricians and local health departments.²¹ NBS program evaluation has continually improved screening breadth and uptake. Moreover, the universality of NBS has normalized neonatal serious illness evaluation. This model of successful coordination between primary care and public health entities provides an important road map that can inform the restructuring of ACP delivery in response to COVID-19–driven health care transformation.

Application of the NBS Framework to ACP: A Public Health–Primary Care Approach

By aligning itself with the NBS framework, the Public-Primary ACP strategy will promote universal ACP as a part of comprehensive clinical care while remaining feasible for real-world implementation.¹⁶ Importantly, the long-term success of an ACP approach motivated by the NBS framework will require adaptability to local circumstances and environmental considerations. Public-Primary ACP strategies that align with COVID-19 health care transformations and mirror NBS processes include (1) preparing patients for program participation at the point of scheduling COVID-19 testing to give patients the opportunity to engage in the program or decline participation (prework); (2) serious illness risk screening during COVID-19 testing encounters (screening); (3) handoff to a primary care provider for ACP delivery and documentation (follow-up); (4) promoting preference-aligned care through centralized, accessible ACP documentation, and when possible, ACP-informed shared decision-making (assessment and management); and (5) collaborative process measure evaluation by public health and primary care partners for continuous program improvement (program evaluation). The Figure¹⁶ describes these proposed Public-Primary ACP interventions corresponding to each of the 5 AAP NBS framework components. Gradual, piecemeal, and modified adaptation of these proposed components can yield realistic but steady uptake of the Public-Primary ACP concept while advancing a culture shift that can grow over time, similar to the progression seen with NBS programs.¹⁸ Although the unpredictability of the COVID-19 pandemic has created waxing and waning demand for COVID-19 testing and contact tracing, using these pandemic opportunities to introduce and normalize the concept of ACP as a public health service may gradually increase ACP access to individuals and reduce ACP health disparities.⁴

Another opportunity resulting from the tailored implementation of the Public-Primary ACP framework, aligned with NBS, involves the development of notification infrastructure that allows comprehensive ACP information sharing across public health and fragmented health system entities. These capabilities would provide a marked improvement over ACP modules contained within electronic health records (EHRs) that often lack the capacity for sharing across health settings (eg, primary care, subspecialty, inpatient) and health systems, thus advancing patient-centered, preference-aligned high-value care.^22,23 The proposed systems build on recent innovations promoting ACP information sharing between public health and health care systems, such as statewide patient registries housing Advance Directives and Portable Medical Orders (POLST).⁴ The transfer of information about patient preferences, proxy decision makers, and goals of care within and across health systems offers significant potential to improve end-of-life care.

Finally, process evaluation plans, collaboratively established by program partners, can inform further implementation and continuous quality improvement. To optimize their partnerships, primary care and public health entities can tailor responsibility and resource delegation in response to local workflows, expertise, and infrastructure. For example, current applications of the Public-Primary ACP framework may consider prioritizing patients who receive ACP outreach based on factors known to increase risk of adverse COVID-19 outcomes,²⁴ whereas future applications of this framework may include prioritizing equitable ACP delivery based upon factors such as age, life expectancy, and social determinants of health.²⁵ Public-Primary ACP can potentially address long-standing barriers to effective ACP that have impeded the delivery of preference-aligned care by adding innovative care delivery structures, systems, and resources to existing ACP processes that involve patients and health systems.

Implementation Parallels and Barriers

If implemented, Public-Primary ACP will likely parallel the slow and fragmented uptake of NBS in the United States. Similar to PKU technology that catalyzed NBS in the 1960s,¹⁸ we collectively have several facilitators that would promote the launch and feasibility of Public-Primary ACP. The COVID-19 pandemic has fueled unprecedented public health investments. These investments will provide capacity to solidify public health–primary care collaboration forged during the pandemic. Second, patients have become accustomed to public health and primary care jointly delivering COVID-19–related services (eg, public health for test sample collection and contact tracing; primary care for diagnosis and disease management). This precedent can make shared management in Public-Primary ACP more acceptable to patients. Third, recent EHR and registry ACP advances have created an infrastructure for proposed information sharing of ACP documentation across public health and health system entities. For example, the partnership between the West Virginia Health Information Network and the West Virginia Center for End-of-Life Care, which has yielded a statewide registry to house advance directives and POLST for patients across the state, demonstrates that ACP information sharing between public health and health care entities is feasible with current technologies.²⁶ Although the nature of this bidirectional communication must be individualized to account for local public health information systems and EHR platforms, progress in policies and technologies promoting health information sharing across systems will continue to facilitate Public-Primary ACP information sharing. Finally, many advances in national health policy concerning ACP reimbursement enhance feasibility and enthusiasm for creating systems-level ACP strategies. The inclusion of ACP as a quality measure for value-based payments by CMS has stimulated institutional engagement toward ACP innovation.²⁷ Simultaneously, provider reimbursement for ACP delivery allows individual clinicians to dedicate clinical time to ACP with patients.²⁸ These circumstances create a primed environment for Public-Primary ACP, especially at local levels. Such local implementation can motivate Public-Primary ACP advocacy and dissemination, similar to the historical development of NBS. Our proposed innovation and its integration of public health infrastructure build on such existing models as POLST by moving beyond the patient locus, allowing for a more holistic ACP workflow.

Several additional structural and policy supports must accompany the proposed framework to ensure its success. Expanding applications of existing infrastructure to reimburse for Public-Primary ACP services can provide critical initial resource investments to local health departments that want to implement framework components. In the short term, one strategy can include creating reimbursement pathways for Public-Primary ACP through the Provider Relief Fund, an HHS fee-for-service claims reimbursement system for COVID-19–related treatment coverage among uninsured patients.²⁹ Small adjustments in existing ACP billing requirements, such as allowing health departments to submit billing codes and deeming public health workers to be qualified professionals able to deliver team-based services, can provide more long-term program resourcing. These immediate strategies may also promote the adult health care access needed for Public-Primary ACP success.³⁰ In areas facing regional shortages in primary care and public health infrastructure, dedicated investments from CMS Innovation Center funds, which have piloted and expanded successful programs such as Comprehensive Primary Care Plus through payer alignment and regional strategy,³¹ can support the resource investments needed to implement program components. Additionally, a CMS Innovation Center model may also facilitate gradual adoption and ongoing evaluation of Public-Primary ACP activities among patients with chronic disease at the state level. Furthermore, Public-Primary ACP successes using these mechanisms will increase ACP delivery to patients, enhancing quality-driven institutional reimbursement through programs that integrate ACP as a quality measure, such as the CMS Bundled Payments for Care Improvement Advanced Model.²⁸ These successes could inspire further institutional buy-in and new partnerships for Public-Primary ACP expansion.^32-34 Additional policy changes to sustain Public-Primary ACP in future phases of expansion can be informed by the initial experiences. However, the road map described here provides the initial impetus needed to pilot the framework. This reenvisioning of ACP by harnessing recent COVID-19–driven health care transformation may help eventually overcome the ongoing stagnation of ACP delivery to patients.⁷ Consistent program evaluation and response can improve the reach of Public-Primary ACP, increasing overall ACP accessibility over time.

Conclusions

The Public-Primary ACP approach offers a promising potential model for improvements in ACP during and beyond the COVID-19 pandemic. Our framework for ACP, modeled after long-standing NBS programs, seeks to leverage opportunities and barriers created by the COVID-19 pandemic to reenvision ACP. This proposed public health–primary care collaborative ACP approach can expand beyond the duration of the pandemic through ongoing modification and transformation. Similar to the NBS program, gradual investments in payment, policy, and evaluation infrastructure will encourage continued program uptake and growth to address persistent ACP care gaps using a novel approach.

Author Affiliations: Division of General Internal Medicine (SB-B, JC), Center for Health Outcomes in Medicine Scholarship and Service (HOMES) (SB-B, BPO, KOM, BJL, DH, JC, JFPB), and Division of Palliative Medicine (BJL), Department of Internal Medicine, The Ohio State University College of Medicine, Columbus, OH; Division of Health Services Management and Policy, The Ohio State University College of Public Health (BPO, ASM), Columbus, OH; The Ohio State University College of Nursing (KOM), Columbus, OH; Department of Family and Community Medicine (ASM); Center for the Advancement of Team Science, Analytics, and Systems Thinking (CATALYST) (ASM, JFPB); Department of Biomedical Informatics (ASM, NC, JFPB); and Center for Bioethics and Medical Humanities (DH, JC), The Ohio State University College of Medicine, Columbus, OH.

Source of Funding: None.

Author Disclosures: Dr Moss has received a College of Nursing seed grant for 2019-2021, a National Institute of Aging diversity supplement for 2019-2022, and a MAYFUND Scholars Award for 2021-2023. The remaining authors report no relationship or financial interest with any entity that would pose a conflict of interest with the subject matter of this article.

Authorship Information: Concept and design (SB-B, BPO, BJL, DH, JC, JFPB); analysis and interpretation of data (KOM, ASM, NC); drafting of the manuscript (SB-B, BPO, KOM, BJL, ASM, DH, JC, NC, JFPB); critical revision of the manuscript for important intellectual content (SB-B, BPO, KOM, BJL, ASM, DH, JC, NC, JFPB); administrative, technical, or logistic support (SB-B, BPO); and supervision (SB-B).

Send Correspondence to: Seuli Bose Brill, MD, Division of General Internal Medicine, Department of Internal Medicine, The Ohio State University College of Medicine, 895 Yard St, Columbus, OH 43212. Email: Seuli.Brill@osumc.edu.

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