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Supporting Family Caregivers: No Longer Home Alone

Addressing What Matters

Carbonell, Ellen LCSW; Zonsius, Mary C. PhD, RN; Rodriguez-Morales, Grisel MSW, LCSW; Newman, Michelle MPH; Emery-Tiburcio, Erin E. PhD, ABPP

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AJN, American Journal of Nursing: January 2022 - Volume 122 - Issue 1 - p 54-58
doi: 10.1097/01.NAJ.0000815440.19544.ed
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Abstract

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Figure:
A nurse, older adult, and family caregiver discuss the older adult's goals and preferences. Photo courtesy of the AARP Public Policy Institute.

By 2040, older adults are projected to make up 21.6% of the U.S. population, an increase from 16% in 2019.1 Most older adults require care as they age, and in the United States this care typically falls to family members or friends, who provide an estimated 24 hours of complex care per week, with 58% performing medical and nursing tasks.2 Although 29% of family caregivers say a health care provider has asked them what support they need to care for their care recipient, only 13% report being asked what they need to care for themselves.2 To shape care interventions to best meet older adults' needs, it is essential that nurses and the health care team understand what is most important to both the care recipient and the family caregiver.

To that end, The John A. Hartford Foundation and the Institute for Healthcare Improvement (IHI), in partnership with the American Hospital Association and the Catholic Health Association of the United States, developed the 4Ms of an Age-Friendly Health System, a framework in which four core elements of care—What Matters, Medication, Mentation, and Mobility—are assessed and acted upon. The framework offers best practices for working with older adults across care settings, and thus has implications for working with caregivers. This article examines the first of the 4Ms, What Matters, which serves as the framework's underpinning. Here, we will discuss identifying what matters to hospitalized older adults and their family caregivers, offer suggestions for partnering with caregivers to ensure that what matters is fully integrated into care, and present tools and resources for both nurses and caregivers.

BACKGROUND

In the 4Ms framework, What Matters to the older adult is the cornerstone for plans of care, and impacts decisions about Medication, Mentation, and Mobility.3 Having conversations to learn about the older adult's health care priorities and preferences is important in every care setting, as well as after a change in health status or stage in life; these conversations ideally reflect person-centered care.4 What matters to the individual may be influenced by their racial and ethnic background, culture, life experiences, and spiritual beliefs.4 Health care priorities for hospitalized older adults vary, but often include returning home, pain remission, improving breathing, and being able to participate in family outings or activities with grandchildren.5

Older adults may be more open to expressing their needs, values, and preferences to clinicians when they and their caregivers are treated as respected and valued members of the health care team.6 This is an important consideration when working with people of diverse backgrounds who may have experienced inequitable treatment when engaging with health care systems.6 Respecting people of diverse backgrounds includes ensuring attention to autonomy, dignity, integrity, and vulnerability.6

Incorporating caregivers into the health care team is also supported by the Caregiver Advise, Record, Enable (CARE) Act. The CARE Act has been enacted into law in 40 states and stipulates that health care systems follow best practice guidelines by integrating family caregivers into the hospitalization process of older adults.7 Under this act, health systems are required to advise older adults that they can identify a caregiver, record the name and contact information of the caregiver in the electronic health record (EHR) with the older adult's consent, and enable family caregivers to help by notifying them about the discharge plan and their role in the plan and providing education on caregiving tasks.7 In an Age-Friendly Health System, implementation of the CARE Act is critical to ensuring patient-centered care and improved communication with caregivers.7

ASSESS WHAT MATTERS

Assessing What Matters to the older adult is a valuable starting point for using the 4Ms framework to align care with the person's preferences and goals.8 Additionally, identifying what matters to family caregivers and attending to their needs plays a key part in optimizing care for older adults. In the hospital setting, after asking the older adult what matters to them, questions to ask the caregiver may include: In your view,

  • what matters to the older adult?
  • what matters to you about their care?
  • what matters most about this hospitalization?
  • what concerns you most about the older adult's health care now and in the future?

When working with individuals whose language differs from yours:

  • May I ask an interpreter to join us so I can ensure I fully understand what matters most to you and your family?

Including caregivers as partners from the point of admission validates the importance of the caregiver's role and can help ensure that the care plan is consistent with what matters to both the older adult and the caregiver. Nurses can facilitate this partnership by making sure the caregiver's contact information is correct; inquiring about the caregiver's preferences for the older adult; asking questions such as, “What's your perspective on how the older adult has been functioning?”; seeking the caregiver's input on the plan of care during daily rounds; and ensuring that the caregiver is ready, willing, and able to meet the older adult's needs at discharge. Assessing this readiness may involve asking:

  • Is everything you'll need in place, so you are ready to provide care?
  • How willing are you to provide the needed care? What are you unwilling to take on?
  • Are you truly able, in a practical sense, to provide care for the older adult? What are the limits of what you can realistically do?

Caregivers' ability to provide effective postdischarge care is often related to the degree of burden they experience. Additionally, balancing caregiving responsibilities with what matters to the caregiver—for example, their career—can be challenging. The Burden Scale for Family Caregivers–short version (www.psychiatrie.uk-erlangen.de/index.php?id=11049) can assist nurses in determining the degree to which the caregiver is stressed by providing care.9 Moreover, the Preparedness for Caregiving Scale (https://hign.org/sites/default/files/2020-06/Try_This_General_Assessment_28.pdf) can help guide nurses through conversations about the caregiver's readiness to meet the older adult's needs after discharge.10 Familiarity with these tools can aid nurses in becoming increasingly sensitive to the issues caregivers face.

Assessing What Matters also includes inquiring about advance care planning (ACP). Nurses should have a conversation with the older adult and the caregiver to see if advance directives are in place or if future care has been discussed. If ACP documents need to be completed during hospitalization, consider which member of the health care team should guide the discussion and ask the older adult to indicate which other family members or caregivers to include in the conversation.4 Because the topic of death is fraught with fear and avoidance for many, ACP discussions are sensitive matters, and approaching the older adult and family caregiver may require attention to timing and tone. An estimated 60% of older adults have participated in ACP, with lower rates among people of color.11, 12 Societal barriers such as distrust, health literacy, and lower education levels contribute to this disparity, reinforcing the importance of individualized approaches to ACP conversations with older adults.11-13

Health care preferences, particularly regarding end-of-life decisions, may shift over time and in changing situations. It is crucial to discuss What Matters throughout the older adult's hospitalization, as needs and priorities change with disease progression, emotional adjustment, and relationship shifts. Nurses can assess What Matters at several key points during the older adult's hospital stay, such as during nurse leader rounds, at the beginning of each shift, and when planning transitions of care.

ACT ON WHAT MATTERS

After learning what matters to the older adult and family caregiver, it is incumbent upon the health care team to act on these priorities, goals, and care preferences. Most importantly, the nurse serves as an advocate to ensure that the goals of care and treatment plan align with what matters to both caregiver and older adult.

Given that most older adults have two or more chronic conditions,14 their health care may need to be coordinated among various providers. Thus, all members of the health care team must be informed about what matters to the older adult and caregiver about the older adult's care. Communicating what matters on the whiteboard, in the EHR, and during change of shift report and clinical rounds are important first steps. Knowing that the health care team is aware of what matters to the older adult can alleviate caregiver distress, particularly when the caregiver cannot be at the bedside. If a caregiver is unable to be present, consider holding a family care meeting via telehealth.

Addressing what matters to family caregivers about their role also affects how care is provided after discharge. When caregivers are included in decisions about the plan for care at home, the plan is more likely to be feasible for the caregiver to implement and adhere to, helping ensure that the older adult will get the care they need. Including the caregiver as a partner in the discharge-planning process is a key component of the CARE Act15 and has been shown to decrease hospital readmission rates and subsequently lead to increased older adult and caregiver satisfaction.16 In one systematic review and meta-analysis, integrating caregivers into the discharge-planning process was associated with a 25% reduction in 90-day readmissions and a 24% reduction in 180-day readmissions compared with usual care.16

Nurses can help ensure family caregivers have the skills they need to support What Matters in the home setting. One evidence-based strategy is the use of a teach-back model for caregiver instruction, which involves the nurse explaining a health care concept or demonstrating a skill and then asking the caregiver to explain or demonstrate it back. Based on the caregiver's response, the nurse determines if an additional teach-back cycle is needed.17

RESOURCES FOR CLINICIANS AND CAREGIVERS

The IHI offers many useful tools for learning about and implementing the 4Ms of an Age-Friendly Health System framework (www.ihi.org/Engage/Initiatives/Age-Friendly-Health-Systems/Pages/Resources.aspx). One such tool is “What Matters” to Older Adults? A Toolkit for Health Systems to Design Better Care with Older Adults, which details how to prepare for and conduct conversations about what matters to older adults and end-of-life care (see Table 1).4 Tools available from programs like The Conversation Project and Patient Priorities Care can help prepare older adults and caregivers for conversations about their care preferences.18, 19 Schaalman Senior Voices (https://aging.rush.edu/schaalman/what-matters-community), from the Rush Center for Excellence in Aging, features a collection of short videos of older adults expressing what matters most to them; these may be useful to watch in order to learn how others articulate what matters. Finally, nurses can refer family caregivers to the tear sheet, Information for Family Caregivers, which offers tips for addressing what matters before, during, and after hospitalization.

Table 1. - Health Care Professional Tools for Assessing and Acting on What Matters
Resources Link
Try This: Age-Friendly Health Systems: The 4Ms https://hign.org/sites/default/files/2020-06/Try_This_General_Assessment_35.pdf
National Center for Ethics in Health Care: Goals of Care Conversations, Resources www.ethics.va.gov/docs/GoCC/gocc_resources_internet_020816.pdf
Patient Priorities Care https://patientprioritiescare.org
Patient Priorities Care: Conversation Guide and Manual for Identifying Patients' Health Priorities https://patientprioritiescare.org/wp-content/uploads/2018/11/Conversation-Guide-and-Manual-for-Identifying-Patients27-Health-Priorities.pdf
The Conversation Project https://theconversationproject.org
“What Matters” to Older Adults? A Toolkit for Health Systems to Design Better Care with Older Adults www.ihi.org/Engage/Initiatives/Age-Friendly-Health-Systems/Documents/IHI_Age_Friendly_What_Matters_to_Older_Adults_Toolkit.pdf

FB1
Box 1:
Information for Family Caregivers

Resources for Nurses

Note: Family caregivers can access these videos, as well as additional information and resources, on AARP's Home Alone Alliance web page: www.aarp.org/nolongeralone.

REFERENCES

1. Administration for Community Living, Administration on Aging. 2020 profile of older Americans. 2021 May. https://acl.gov/sites/default/files/Aging%20and%20Disability%20in%20America/2020ProfileOlderAmericans.Final_.pdf.
2. AARP and National Alliance for Caregiving. Caregiving in the U.S., 2020 report. Washington, DC; 2020 May. https://www.aarp.org/content/dam/aarp/ppi/2020/05/full-report-caregiving-in-the-united-states.doi.10.26419-2Fppi.00103.001.pdf.
3. Tinetti M. Age friendly—focus on what matters: simplifying complex care of older adults. Health Prog 2019;100(3).
4. Laderman M, et al. “What matters” to older adults? A toolkit for health systems to design better care with older adults. Boston: Institute for Healthcare Improvement; 2019. Age-friendly health systems; http://www.ihi.org/Engage/Initiatives/Age-Friendly-Health-Systems/Documents/IHI_Age_Friendly_What_Matters_to_Older_Adults_Toolkit.pdf.
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6. Beach MC, et al. Diverse patient perspectives on respect in healthcare: a qualitative study. Patient Educ Couns 2017;100(11):2076–80.
7. Reinhard SC, et al. The CARE Act implementation: progress and promise. Washington, DC: AARP Public Policy Institute; 2019 Mar. https://www.aarp.org/content/dam/aarp/ppi/2019/03/the-care-act-implementation-progress-and-promise.pdf.
8. Fulmer T, et al. Age-friendly health systems: the 4Ms. New York, NY: The Hartford Institute for Geriatric Nursing, New York University Rory Meyers College of Nursing; 2019. Issue number 35. https://hign.org/sites/default/files/2020-06/Try_This_General_Assessment_35.pdf.
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10. Zwicker D. Preparedness for caregiving scale. New York, NY: Hartford Institute for Geriatric Nursing, New York University Rory Meyers College of Nursing; 2018. Issue number 28. https://hign.org/sites/default/files/2020–06/Try_This_General_Assessment_28.pdf.
11. Harrison KL, et al. Low completion and disparities in advance care planning activities among older Medicare beneficiaries. JAMA Intern Med 2016;176(12):1872–5.
12. Rao JK, et al. Completion of advance directives among U.S. consumers. Am J Prev Med 2014;46(1):65–70.
13. Phung LH, et al. English and Spanish-speaking vulnerable older adults report many barriers to advance care planning. J Am Geriatr Soc 2021;69(8):2110–21.
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17. Agency for Healthcare Research and Quality. Teach-back: a guide for staff. Rockville, MD; 2017. https://www.ahrq.gov/sites/default/files/wysiwyg/professionals/quality-patient-safety/patient-family-engagement/pfeprimarycare/TeachBack-A-Guide-For-Staff.pdf.
18. Lally M, et al. How to talk to your patients about end-of-life care: a conversation ready toolkit for clinicians. Boston: Institute for Healthcare Improvement; 2019. http://www.ihi.org/resources/Pages/Tools/Conversation-Ready-Toolkit-for-Clinicians.aspx.
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