Making Care Fit in the Lives and Loves of Patients With Chronic Conditions | Geriatrics | JAMA Network Open | JAMA Network
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Geriatrics
March 24, 2021

Making Care Fit in the Lives and Loves of Patients With Chronic Conditions

Author Affiliations
  • 1Biomedical Data Sciences, Leiden University Medical Center, Leiden, the Netherlands
  • 2Knowledge and Evaluation Research Unit, Mayo Clinic, Rochester, Minnesota
  • 3Division of Endocrinology, Diabetes, Metabolism, and Nutrition, Mayo Clinic, Rochester, Minnesota
JAMA Netw Open. 2021;4(3):e211576. doi:10.1001/jamanetworkopen.2021.1576

Designing care plans requires patients and clinicians to work together to uncover the situation of the patient and to determine how to best respond to it.1 For these care plans to fit individual patients and their lives, they need to be biomedically correct; consistent with patients’ personal values, desires, goals, and context; and feasible to be implemented in daily life.2 Patients with care plans that do not fit “receive tests and treatments they do not need, understand or implement, a result that is wasteful and harmful.”2(p18) In this issue of JAMA Network Open, Tinetti and colleagues3 describe common outcome goals and health care preferences of older adults with multiple chronic conditions, as elicited by an advanced practice nurse or case manager. The authors found that the goals of older adults were both realistic and actionable, and in previous research of their Patient Priorities Care (PPC) program,4 clinicians and other stakeholders believed that these goals can help clinicians in making decisions about the patients’ care. A clinical trial found that eliciting patient priorities and providing this information to clinicians was associated with a reduction in treatment burden and an increase in discontinuation of medication use and in goal-aligned care.5 These findings yet again stress the importance of patients and clinicians working together and combining their expertise to make care fit.

The patient-clinician collaboration to make care fit can take place at the point of care, mostly during clinical encounters in which the patient’s biomedical and contextual situation is taken into account, and at the point of life, mostly in the patient’s personal environment. The patient is usually the one person bridging these 2 efforts, and whatever happens at the point of life remains to some extent invisible to clinicians if left undiscussed at the point of care. Tinetti and colleagues provide an exemplary quote from a patient with diabetes saying: “I do my blood sugar check every other day, every day is too much.”3 To make the care plan fit within her daily routines, the patient modified it at the point of life. Nevertheless, this patient may be labeled as “noncompliant,” a condemnatory term that is blind to the patient’s context, reasoning, and work. It is precisely this context, reasoning, and self-management work that need to be brought into the clinical encounter to contribute to the cocreation of care that fits.

In the PPC program, the meetings between patients and their nurse or case manager may help to overcome the contextual blindness and contribute to making care fit, and the authors believe the identified goals can guide clinician decision-making. Rather than a conversation, this method may facilitate a staccato collaboration by which the patient provides goals and the clinician decides how to achieve those goals. Also, the method may not contribute to cocreation.

It is possible that in the spirit of efficiency, for example, the elicitation of priorities for documentation and feedforward networking will be coupled with a library of care plans and an algorithmic approach to determine which plan is a better match to the priorities of each patient.6 Tinetti and colleagues3 hint at the possibility of developing a comprehensive map of the broad but likely finite universe of goals and priorities linked to associated issues and connected with the interventions most likely to achieve those goals. This effort seems related to the traditional categorization of diseases and their adverse outcomes and the formulation of evidence-based recommendations to prevent them. Paradoxically, the application of algorithmic guidelines in response to “biological priorities” has contributed to polypharmacy and poorly fitted care, justifying in part the PPC program. How will patient priorities retain the personal context that gives them sense when documented in the medical record and used at another time and place to shape care without a new conversation? How will responding in this manner prevent us from once again missing the person in the patient? How will we ensure that responding to the documented priorities does not produce care plans hat fail to make sense intellectually, practically, and emotionally to the patient?

Future work should uncover how priority elicitation can support the conversational dance of the patient and the clinician as they work together to continuously fit possible care plans. This approach can be seen as an elaborate cognitive and collaborative exercise, akin to trying on different clothes at the shop before taking them home. Clinicians and patients will need to consider patient priorities, the activities likely to advance them, and the extent to which their cumulative contribution to existing care will be helpful or burdensome in the patient’s life. This complex analysis, however, seems feasible when conducted within a longitudinal partnership punctuated by critical and unhurried conversations.7

Rather than making the case for a comprehensive and complete map of patient priorities, the PPC program makes a strong case for how personal and contextual patient priorities can be. These priorities are likely to differ across patients with similar medical conditions and within the same patient over time, because they live with chronic conditions amid the tumultuous and exciting complexity of their lives. How to advance their care in a manner that makes intellectual, practical, and emotional sense is also likely to differ across patients with similar priorities and within the same patient over time. This process demands the ongoing elicitation and incorporation of patient preferences within continuous and complementary efforts—at the point of care and at the point of life—to integrate care and living. The PPC program has shown that eliciting patient priorities and using them to craft care is possible and effective. We need to shed light on the nature of the work of making care fit to ensure that it can effectively advance patient priorities while minimally disrupting their lives and loves.

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Article Information

Published: March 24, 2021. doi:10.1001/jamanetworkopen.2021.1576

Open Access: This is an open access article distributed under the terms of the CC-BY License. © 2021 Kunneman M et al. JAMA Network Open.

Corresponding Author: Marleen Kunneman, PhD, Biomedical Data Sciences, Leiden University Medical Center, PO Box 9600, 2300 RC Leiden, the Netherlands (kunneman@lumc.nl).

Conflict of Interest Disclosures: Dr Kunneman reported receiving personal grant 016.196.138 from the Dutch Research Council, The Netherlands Organisation for Health Research and Development, for her research on how to improve making care fit. No other disclosures were reported.

References
1.
Tamhane  S, Rodriguez-Gutierrez  R, Hargraves  I, Montori  VM.  Shared decision-making in diabetes care.   Curr Diab Rep. 2015;15(12):112. doi:10.1007/s11892-015-0688-0 PubMedGoogle ScholarCrossref
2.
Kunneman  M, Brito JP, Montori VM.  Making Diabetes Care Fit: Diabetes Update. NEJM Group; June 2020:18-20.
3.
Tinetti  ME, Costello  DM, Naik  AD,  et al.  Outcome goals and health care preferences of older adults with multiple chronic conditions.   JAMA Netw Open. 2021;4(3):e211271. doi:10.1001/jamanetworkopen.2021.1271Google Scholar
4.
Ferris  R, Blaum  C, Kiwak  E,  et al.  Perspectives of patients, clinicians, and health system leaders on changes needed to improve the health care and outcomes of older adults with multiple chronic conditions.   J Aging Health. 2018;30(5):778-799. doi:10.1177/0898264317691166 PubMedGoogle ScholarCrossref
5.
Tinetti  ME, Naik  AD, Dindo  L,  et al.  Association of patient priorities-aligned decision-making with patient outcomes and ambulatory health care burden among older adults with multiple chronic conditions: a nonrandomized clinical trial.   JAMA Intern Med. 2019;179(12):1688-1697. doi:10.1001/jamainternmed.2019.4235 PubMedGoogle Scholar
6.
Glaser  J. It’s time for a new kind of electronic health record. Harvard Business Review. Published June 12, 2020. Accessed January 28, 2021. https://hbr.org/2020/06/its-time-for-a-new-kind-of-electronic-health-record
7.
Hargraves  I, Breslin  M, Shaw  K, Morera  L, Branda  M, Montori  V. Careful and kind care requires unhurried conversations. NEJM Catalyst. Published October 29, 2019. Accessed January 28, 2021. https://catalyst.nejm.org/doi/full/10.1056/CAT.19.0696?linkId=76136934
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    1 Comment for this article
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    Author Response to Making Care Fit in the Lives and Loves of Patients With Chronic Conditions
    Mary Tinetti, MD | Yale School of Medicine
    We appreciate Drs. Kunneman’s and Montori’s point that our findings, “yet again stress the importance of patients and clinicians working together and combining their expertise to make care fit.“ (1,2)  We want to clarify, however, that they misinterpreted how patient priorities care (PPC) works when they write “this method may facilitate a staccato collaboration by which the patient provides goals and the clinician decides how to achieve those goals” and when they suggest that “In the spirit of efficiency, the elicitation of priorities for documentation and feedforward networking will be coupled with a library of care plans and an algorithmic approach...“ This interpretation does not reflect our intentions or experiences in published studies and dissemination efforts (3,4).

    As stated in the report of our trial, “Patient priorities care offers a platform for shared decision-making for persons with multiple chronic conditions...“ (3). Patient priorities-aligned decision-making fosters collaboration between patients and clinicians who together communicate and decide what care is most appropriate given patients’ unique combinations of health conditions and health priorities. An underlying premise for PPC is that such uniqueness necessitates an individually tailored approach that is not reducible to standardized guidelines or algorithms. This individually tailored approach is drawn from a conceptually-robust method for identifying patient priorities.

    In the trial which generated the current data, an APRN or case manager helped patients identify their health priorities (1). This approach reflects current healthcare in which interdisciplinary teams work together. Transmitting individuals’ health priorities through the EHR has the advantage of ensuring that all health professionals caring for a patient have access. This valuable information should not be under the purview of any one clinician when several clinicians and other health professionals are involved in caring for a patient. Identifying a patient’s health priorities is not a one-time event. Rather, collaboration is ongoing, grounded in aligning care with patient priorities which likely will change as life and health changes.

    While its core features include identifying patient healthcare priorities and all health professionals working with patients to align care with these priorities, the process for who or when this happens needs to be flexible given the variable composition and structure of clinical settings and healthcare teams. Indeed, we have reported the feasibility and effectiveness of having a primary care clinician both help individuals identify their health priorities and then work with them on aligning care (4). We agree with Kunneman and Montori that “This process demands the ongoing elicitation and incorporation of patient preferences within continuous and complementary efforts…to integrate care and living.” (1)

    Reference

    1. Kunneman M, Montori V. Making Care Fit in the Lives and Loves of Patients With Chronic Conditions. JAMA Netw Open. 2021;4(3):e211576

    2. Tinetti ME et al. Outcome Goals and Health Care Preferences of Older Adults With Multiple Chronic Conditions. JAMA Netw Open. 2021;4(3):e211271

    3. Tinetti ME, et al. Association of patient priorities–aligned decision-making with patient outcomes and ambulatory health care burden among older adults with multiple chronic conditions: a nonrandomized clinical trial. JAMA Intern Med. 2019;179(12):1688-97

    4. Freytag J et al. Feasibility of clinicians aligning healthcare with patient priorities in geriatrics ambulatory care. J Am Geriatr Soc. 2020;6(9):2112-16
    CONFLICT OF INTEREST: None Reported
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