Journal of General Internal Medicine

, Volume 30, Issue 10, pp 1497–1504 | Cite as

A Look at Person-Centered and Family-Centered Care Among Older Adults: Results from a National Survey

Original Research

ABSTRACT

BACKGROUND

Person-centered and family-centered care represents the pinnacle of health care quality, but delivering it is challenging, as is assessing whether it has occurred. Prior studies portray older adults as passive in health decisions and burdened by care—but emphasize age-based differences or focus on vulnerable subgroups.

OBJECTIVES

We aimed to examine domains of person-centered and family-centered care among older adults and whether the social context in which older adults manage their health relates to preferences for participating in health decisions and experiences with care.

DESIGN AND PARTICIPANTS

This was an observational study of a nationally representative survey of adults aged 65+ years, conducted in concert with the 2012 National Health and Aging Trends Study (n = 2040).

MAIN MEASURES

Approach to managing health (self-manage, co-manage, delegate); preferences for making health care decisions with: (1) doctors, (2) family/close friends; and experiences with care pertaining to treatment burden were measured.

KEY RESULTS

Approximately two-thirds of older adults self-manage (69.4 %) and one-third co-manage (19.6 %) or delegate (11.0 %) health care activities. The majority prefer an independent or shared role when making health decisions with doctors (84.7 %) and family/close friends (95.9 %). Nearly four in ten older adults (37.9 %) experience treatment burden—that managing health care activities are sometimes or often hard for either them or their family/close friends, that health care activities get delayed or don’t get done, or that they are cumulatively too much to do. Relative to older adults who self-manage, those who delegate health care activities are more likely to prefer to share or leave health decisions to doctors (aOR = 1.79 (95 % CI, 1.37–2.33) and family/close friends (aOR = 3.12 (95 % CI, 2.23–4.36), and are more likely to experience treatment burden (aOR = 2.37 (95 % CI, 1.61–3.47).

CONCLUSIONS

Attaining person-centered and family-centered care will require strategies that respect diverse decision-making preferences, minimize treatment burden, and support the broader social context in which older adults manage their health.

KEY WORDS

decision-making treatment burden self-management patient-centered care older adults 

Person-centered and family-centered care is thought to represent the pinnacle of health care quality.1 However, delivering it is challenging, as is our ability to assess whether it has occurred.2 Attaining person-centered and family-centered care is particularly important and challenging in the care of older persons, given vast heterogeneity in health and function, treatment preferences, and individual goals.3 , 4 Because many older adults are heavy users of health services, they are more susceptible to treatment burden as well as harms associated with complicated therapeutic and preventive regimens.5 7 Age-related changes in sensory, cognitive, and physical function may prompt some older adults to rely on or choose to involve family members or close friends in managing their health.8 , 9

The existing literature generally indicates that older adults prefer a passive role in health care decision-making10 12 and portrays older adults as burdened by care.13 , 14 However, prior studies have typically emphasized age-related differences,10 , 11 or focused on targeted subgroups of older adults with low-literacy, poor health, or specific conditions.12 16 Understanding what people view to be important and their experience of care is foundational in the measurement of person-centered and family-centered care.2 Therefore, we designed a study to understand older adults’ preferences for participating in health care decision-making and their experiences with care as measured by aspects of treatment burden associated with managing health. We address existing gaps in the measurement of person-centered and family-centered care by drawing on a nationally representative, population-based data source to examine issues that are meaningful to those receiving care, focusing on the entire care experience as opposed to a single decision or point in time.2 We sought to understand if older adults’ perspectives vary with respect to whether they manage their health independently or with the involvement of family or close friends.

METHODS

Data Sources and Study Sample

This study draws on the 2012 National Health and Aging Trends Study (NHATS), a population-based survey of health and disability trends and trajectories among Medicare beneficiaries aged 65 years and older. NHATS fields annual in-person interviews with study participants or a proxy if the participant is unable to respond. The NHATS study design and procedures have been described previously.17 , 18 The sample for this study includes a random sample of 2040 participants who responded to a supplemental module fielded in 2012 and who were living in the community or a residential care facility. Wave 2 response rates were 84.5 % for community-dwelling and 94.1 % for residential care participants, respectively.19 Participants living in nursing homes were excluded. With sample weights, participants represent approximately 33.4 million Medicare beneficiaries ages 65 and older. As the data used in this analysis are publicly available with no unique identifiers, our study was exempt from Institutional Review Board review.

Study Outcomes

Study outcomes reflect domains of person-centered and family-centered care that relate to the social context in which health care activities are performed with family/close friends, preferences for participating in health care decisions, and the experience of care (See Box). Because older adults’ preferences for health care decision-making and perspectives on managing their health in part reflect how activities are performed, we first examine how older adults manage health care activities using three categories: “self-manage”, “co-manage” with family members or close friends, and “delegate” to family members or close friends. To assess preferences for health care decision-making, we devised questions with attention to existing measures and recent conceptual work indicating the importance of doctors, as well as family and close friends, as elements of informed decision-making.10 , 20 , 21 We separately examined older adults’ preferences for participating in health care decisions with doctors and family and close friends using the following categories: “making decisions independently, with or without advice”, “share decisions” and “leave decisions up to them.” Finally, we developed questions to assess older adults’ perspectives on their experiences managing their health, drawing on prior work to articulate disease-specific treatment burden.6 , 7 , 22 24 We constructed a summary measure that identified participants who reported that one or more of four individual experiences relating to treatment burden occur “sometimes” or “often.”

Box 1.

How Participants Manage Health Care Activities:

Participants were read the statement: “People today are asked by their doctors and other health care providers to do many things to stay healthy or treat health problems—for example, manage medicines, get tests and lab work done, watch weight and blood pressure, or have yearly exams.” Participants were asked: “How do you usually handle these things?

Response categories included:

• Mostly independently (subsequently referred to as “self-manage”),

• Together with family members or close friends (subsequently referred to as “co-manage”),

• Mostly managed by others,*

• It varied.*

*As these response categories were endorsed by fewer participants with similar sociodemographic and health characteristics, they were combined for reporting purposes. For simplicity we refer to this combined group as “delegate.”

Preferences for Health Care Decision-Making:

Participants were read the statement: “People today are faced with many decisions about their health care—for example whether to start or change a medicine. We want to know how you prefer to have doctors and family or close friends help with decisions.” Participants were separately asked about both doctors and family and close Friends as follows:

Doctors :Thinking about your doctors, do you prefer to…”

Family and Close Friends :Thinking about your family and close friends, do you prefer to…”

Response categories included:

• Make decisions without much advice,**

• Get their advice and then make decisions,**

• Make decisions together (subsequently referred to as “share decisions”)

• Leave decisions up to them.

**The first two response categories are combined, which we subsequently refer to as “making decisions independently, with or without advice.”

Experiences that Pertain to Treatment Burden

Participants were asked to reflect on the things they are asked to do to stay healthy or treat health problems as listed above (managing medicines, getting tests and lab work done, watching weight and blood pressure, or having yearly exams). They were then asked the following four questions:

• “How often are these things difficult for you to do?”

• “How often are these things difficult for your family or close friends to handle?”

• “How often do these things that you do to stay healthy or treat health problems get delayed or not get done?

How often do you feel that doctors or other providers ask you to do too much?”

Response categories for questions included: “never”, “rarely”, “sometimes”, and “often.”

We constructed a summary measure to identify participants who reported that one or more of the four experiences that pertain to treatment burden occur “sometimes” or “often.”

Covariates

We examine older adults’ age, gender, educational attainment, self-rated health, numbers of chronic medical conditions, self-reported hospitalization in the prior year, and sensory impairment. Depressive symptoms were measured using established cut-points of the PHQ-2.25 Cognitive impairment was examined using a composite measure from self-reported doctor diagnosis of Alzheimer’s disease or dementia, the AD8 dementia screening interview that was administered to proxy respondents,26 and cognitive tests to evaluate participant’s memory, orientation, and executive function.27

Analytic Approach

We described participants’ sociodemographic and health characteristics in relation to how they manage health care activities. We then examined older adults’ health care decision-making preferences and experience of treatment burden, stratified by how they manage health care activities. Finally, we constructed simple and multivariate logistic regression models to investigate the strength and magnitude of characteristics of older adults in relation to decision-making preferences and treatment burden. Sensitivity analyses were conducted using the subsample of participants who self-reported survey responses (94.1 % of weighted participants; data available on request). Proxy responses were more common among participants who co-managed (7.6 %) or delegated (27.4 %) health care activities than among participants who self-managed (1.1 %). However, as sensitivity analyses yielded comparable estimates and confidence intervals, results for the full sample (including proxy respondents) are reported. All analyses were conducted in SAS 9.3 using survey sampling weights and statements to account for the complex sampling strategy of NHATS.

RESULTS

An estimated 23.2 million (69.4 %) older adults self-manage their health, 6.6 million (19.6 %) co-manage their health, and 3.7 million (11.0 %) delegate health care activities to family or close friends (Table 1). How older adults manage health care activities varies widely by sociodemographic and health characteristics. With greater age, lower educational attainment, and worse self-rated health, older adults are incrementally less likely to self-manage and more likely to co-manage or delegate health care activities. For example, relative to those who self-manage their health, older adults who co-manage or delegate health care activities are older (73.7, 76.8, and 78.7 years respectively), more likely to rate their health as fair or poor (17.4 %, 29.5 %, and 37.0 %) and to have cognitive impairment (2.4 %, 13.0 %, and 31.7 %).
Table 1

Characteristics of Community-Dwelling Older Adults by Management of Health Care Activities

 

Manage Health Care Activities (Column %)

 

Self-Manage

Co-Manage

Delegate

Population estimate (row %)*

23,200,000 (69.4 %)

6,600,000 (19.6 %)

3,700,000 (11.0 %)

Mean age

73.7

76.8

78.7

Female Gender

60.1 %

50.4 %

51.1 %

Educational Attainment

 Less than High School

17.5 %

32.8 %

34.2 %

 High School

26.8 %

26.9 %

25.3 %

 Some College

26.9 %

17.7 %

21.6 %

 College or Beyond

28.8 %

22.5 %

18.9 %

Self-Rated Health

 Excellent or very good

50.5 %

35.5 %

27.8 %

 Good

32.1 %

34.9 %

35.2 %

 Fair or poor

17.4 %

29.5 %

37.0 %

Depressive Symptoms

9.3 %

16.5 %

26.9 %

Cognitive Impairment

 No evidence

88.4 %

73.0 %

56.1 %

 Indeterminate

9.2 %

14.0 %

12.2 %

 Probable

2.4 %

13.0 %

31.7 %

Significant Sensory Impairment

3.7 %

10.4 %

18.4 %

Numbers of Chronic Medical Conditions§

 None

11.0 %

9.7 %

7.8 %

 One

21.5 %

18.8 %

17.1 %

 Two

31.9 %

25.7 %

31.3 %

 Three or more

35.5 %

45.9 %

43.9 %

Hospitalized in Prior Year

20.1 %

28.2 %

34.1 %

Source: National Health and Aging Trends Study, 2012

*Data are weighted to reflect community-dwelling Medicare beneficiaries ages 65 years or older using the 2011 sample frame (n = 6154); individuals living in nursing facilities (n = 418) or who died (n = 503) were excluded

< 1 % of observations with responses of "don’t know", "refused", or "not ascertained"; categorized as less than high school education, "poor" self-rated health, absence of depressive symptoms, and not hospitalized in prior year

Respondent report of being deaf or unable to hear well enough to use the telephone or carry on a conversation in a quiet room with a hearing aid, or being blind or unable to see well enough to read newspaper print with vision aids or glasses.

§Chronic medical conditions refer to self-reported physician diagnosis of heart attack, heart disease, high blood pressure, arthritis, osteoporosis, diabetes, lung disease, stroke, cancer, and hip fracture

Older adults’ decision-making preferences vary widely with respect to how they manage health care activities (Table 2). Among older adults who self-manage their health, most prefer to make health care decisions independently with or without their doctor’s advice (50.6 %) or share decisions with their doctors (36.5 %), and fewer (12.5 %) prefer to leave decisions up to doctors. In contrast, among older adults who delegate health care activities to family or close friends, decision-making preferences with doctors are relatively balanced with respect to making decisions independently with or without their doctor’s advice (30.4 %), sharing decisions (37.7 %), or leaving decisions to their doctor (30.3 %).
Table 2

Older Adults’ Preferences for Participating in Health Care Decisions and Experience of Treatment Burden

 

Manage Health Care Activities (Column %)

Older Adults’ Preferences for Health Care Decision-Making

Total

Self-Manage

Co-Manage

Delegate

With Doctors

 Make decisions independently with or without doctor advice

47.3 %

50.6 %

45.0 %

30.4 %

 Share decisions

37.4 %

36.5 %

40.6 %

37.7 %

 Leave decisions up to them

14.8 %

12.5 %

14.3 %

30.3 %

With Family and Friends

 Make decisions independently with or without family/friend advice

67.8 %

77.2 %

47.7 %

44.8 %

 Share decisions

28.1 %

21.4 %

49.1 %

32.6 %

 Leave decisions up to them

3.8 %

1.3 %

2.9 %

21.7 %

Older Adults’ Experience of Treatment Burden

"The things that you are asked to do to stay healthy are ‘sometimes or often…’”

 - Hard for you (the participant)?

24.1 %

21.9 %

30.8 %

25.4 %

 - Hard for family or close friends?

7.0 %

0.0 %

20.1 %

28.0 %

 - Get delayed or not get done?

22.1 %

22.6 %

20.1 %

22.9 %

 - How often do you feel that doctors/other providers ask you to do too much?

12.4 %

12.1 %

12.9 %

13.1 %

 Treatment Burden, defined as one or more of the above

37.9 %

34.3 %

41.7 %

54.0 %

Source: National Health and Aging Trends Study, 2012

*Data are weighted to represent 33.4 million community-dwelling Medicare beneficiaries ages 65 years or older

Individuals who reported that family or close friends manage health care activities were not asked this question. The percentage listed in the “delegate” column reflect responses of individuals who reported that how they manage their health care activities “varies” (in the numerator) in relation to the combined group of those who reported that family or close friends manage health care activities or that it “varies” (in the denominator; see Box for further clarification). Of those asked the question, 42.1 % reported the things they are asked to do to stay health are “sometimes or often” hard for them

Approximately one-third (31.9 %) of older adults prefer to share or leave health care decisions to family members and close friends. Among older adults who self-manage their health, most prefer to make health care decisions independently with or without advice from family and close friends (77.2 %), and fewer prefer to share (21.4 %) or leave decisions to family and close friends (1.3 %). Among older adults who co-manage their health, about half prefer to make decisions independently (47.7 %) or share decisions (49.1 %), few (2.9 %) prefer to leave decisions to family and close friends. Older adults who delegate management of health care activities express a greater preference for involving family and close friends in health care decisions; less than half prefer to make decisions independently (44.8 %), with the remainder preferring to share (32.6 %) or leave health care decisions to family and close friends (21.7 %).

One-fourth (24.1 %) of older adults report the things they do to stay healthy are “sometimes or often difficult” for them (bottom panel of Table 2). Older adults who co-manage or delegate health care activities to others report that managing their health is sometimes or often hard for family or close friends (20.1 % and 28.0 %, respectively). About one in five older adults report that health care activities sometimes or often get delayed or do not get done (range: 20.1–22.9 %). Fewer older adults report that doctors or other providers asked them to “do too much” (range: 12.1 % to 13.1 %). These reports varied little on the basis of how health care activities were managed. Nearly four in ten older adults (37.9 %) experience some degree of treatment burden on the basis of reporting one or more of the four experiences sometimes or often. Treatment burden was experienced more often among those who co-manage (41.7 %) or delegate (54.0 %) health care activities than those who self-manage (34.3 %).

We constructed simple and multivariate regression models to determine whether older adults’ sociodemographic and health characteristics and how they manage their health relates to preferences for participating in health care decisions with doctors (Table 3; left panel) and family and close friends (Table 3; right panel). Relative to women, men were more likely to prefer to share or leave decisions to doctors (aOR = 1.30; 95 % CI: 1.07–1.57), as were older adults with (versus without) cognitive impairment (aOR = 1.53; 95 % CI: 1.09–2.14) and two (aOR = 1.61; 95 % CI: 1.08, 2.39) or three or more (versus no) chronic medical conditions (aOR = 1.47; 95 % CI: 1.04–2.06). In comparison with older adults who self-managed their health, those who delegated health care activities to family members and friends were significantly more likely to prefer to share or leave health care decisions to doctors (aOR = 1.79; 95 % CI 1.37–2.33).
Table 3

Preferences for Participating in Health Care Decisions with Doctors and Family/Close Friends: Multivariate Regression Results

 

Prefer to Share or Leave Health Care Decisions Up To:

Doctor

Family or Friends

Unadjusted

Adjusted *

Unadjusted

Adjusted *

OR

(95 % CI)

aOR

(95 % CI)

OR

(95 % CI)

aOR

(95 % CI)

Age

1.01

(1.00, 1.02)

1.00

(0.98, 1.01)

1.03

(1.01, 1.04)

1.00

(0.99, 1.02)

Male Gender

1.30

(1.06, 1.59)

1.38

(1.13, 1.67)

1.20

(0.96, 1.49)

1.18

(0.91, 1.52)

Education

 College or beyond

Reference Group

Reference Group

Reference Group

Reference Group

 Some college

0.89

(0.64, 1.24)

0.88

(0.63, 1.24)

1.20

(0.87, 1.67)

1.24

(0.88, 1.76)

 High school

1.17

(0.87, 1.58)

1.14

(0.86, 1.52)

1.25

(0.94, 1.67)

1.16

(0.85, 1.59)

 Less than high school

1.24

(0.94, 1.64)

1.02

(0.76, 1.38)

1.83

(1.40, 2.38)

1.30

(1.01, 1.67)

Self-Rated Health

 Excellent or very good

Reference Group

Reference Group

Reference Group

Reference Group

 Good

1.38

(1.13, 1.69)

1.19

(0.94, 1.53)

1.03

(0.81, 1.31)

0.77

(0.57, 1.05)

 Fair or poor

1.33

(1.04, 1.70)

1.04

(0.76, 1.41)

1.62

(1.24, 2.12)

0.97

(0.71, 1.31)

Depressive Symptoms

1.15

(0.87, 1.53)

0.92

(0.70, 1.22)

1.66

(1.22, 2.27)

1.17

(0.82, 1.65)

Cognitive Impairment

 No evidence

Reference Group

Reference Group

Reference Group

Reference Group

 Possible

1.13

(0.81, 1.58)

1.01

(0.71, 1.45)

1.51

(1.07, 2.14)

1.21

(0.84, 1.76)

 Probable

2.06

(1.49, 2.83)

1.54

(1.11, 2.14)

3.54

(2.61, 4.79)

1.87

(1.29, 2.72)

Significant Sensory Impairment

1.81

(1.27, 2.59)

1.37

(0.96, 1.95)

2.14

(1.50, 3.05)

1.13

(0.75, 1.71)

Chronic Medical Conditions

 None

Reference Group

Reference Group

Reference Group

Reference Group

 One

0.98

(0.67, 1.44)

1.00

(0.68, 1.45)

1.12

(0.76, 1.66)

1.15

(0.72, 1.84)

 Two

1.61

(1.07, 2.40)

1.61

(1.08, 2.39)

1.55

(1.12, 2.16)

1.60

(1.07, 2.40)

 Three or More

1.54

(1.10, 2.16)

1.47

(1.04, 2.06)

1.61

(1.10, 2.34)

1.45

(0.91, 2.33)

Hospitalized in Prior Year

1.23

(0.96, 1.56)

1.07

(0.83, 1.39)

1.23

(0.96, 1.57)

0.98

(0.72, 1.33)

Manage Health Care Activities

 Self-manage

Reference Group

Reference Group

Reference Group

Reference Group

 Co-manage

1.26

(0.96, 1.66)

1.12

(0.83, 1.51)

3.70

(2.76, 4.97)

3.33

(2.44, 4.55)

 Delegate

2.20

(1.70, 2.86)

1.79

(1.37, 2.33)

4.07

(3.01, 5.51)

3.12

(2.23, 4.36)

Source: National Health and Aging Trends Study, 2012

Bold entries are significant to P<0.05

*Adjusted for age, gender, education, self-rated health, depressive symptoms, cognitive impairment, sensory impairment, hospitalization in prior year, and approach to managing health care activities

Older adults with less than high school education (versus college or more) aOR = 1.30; 95 % CI: 1.01–1.67) and cognitive impairment (aOR = 1.87; 95 % CI: 1.29–2.72) were significantly more likely to prefer to share or leave health care decisions to family and close friends. In comparison with older adults who self-managed their health, those who co-managed or delegated health care activities to family members and friends were more than three times as likely to prefer to share or leave health care decisions to family or close friends (aOR = 3.33; 95 % CI: 2.44–4.55 and aOR 3.12; 95 % CI: 2.23–4.36, respectively).

Markers of poor health and health literacy were strongly associated with the experience of treatment burden (Table 4). In comparison to older adults who rated their health as excellent or very good, those in fair or poor health were twice as likely (aOR = 2.01; 95 % CI: 1.54–2.64) and those in good health were 1.41 times more likely (aOR = 1.41; 95 % CI: 1.09–1.82) to experience treatment burden. Individuals with (versus without) depressive symptoms (95 % CI: 1.25–2.32) and less than high school education (versus college or more) (aOR = 1.36; 95 % CI: 1.01–1.83) were significantly more likely to report treatment burden. Older adults who delegate health care activities were more than twice as likely to report treatment burden relative to those who self-manage their health (aOR = 2.37; 95 % CI: 1.61–3.47).
Table 4

Older Adults’ Perspectives on Experience of Treatment Burden: Multivariate Regression Results

 

Treatment Burden

Unadjusted

Adjusted *

OR

(95 % CI)

aOR

(95 % CI)

Age

0.99

(0.98, 1.01)

0.97

(0.96, 0.99)

Male Gender

0.95

(0.78, 1.17)

0.91

(0.73, 1.15)

Education

 College or beyond

Reference Group

Reference Group

 Some college

1.51

(1.14, 2.00)

1.32

(0.99, 1.76)

 High school

1.28

(0.98, 1.66)

1.09

(0.83, 1.44)

 Less than high school

1.88

(1.47, 2.39)

1.36

(1.01, 1.83)

Self-Rated Health

 Excellent or very good

Reference Group

Reference Group

 Good

1.53

(1.23, 1.91)

1.41

(1.09, 1.82)

 Fair or poor

2.48

(1.95, 3.15)

2.01

(1.54, 2.64)

Depressive Symptoms

2.26

(1.78, 2.87)

1.70

(1.25, 2.32)

Cognitive Impairment

 No evidence

Reference Group

Reference Group

  

 Possible

1.16

(0.83, 1.63)

0.99

(0.69, 1.42)

 Probable

1.46

(1.08, 1.97)

1.10

(0.74, 1.64)

Significant Sensory Impairment

1.61

(1.13, 2.31)

1.25

(0.80, 1.96)

Numbers of Chronic Medical Conditions

 None

Reference Group

Reference Group

  

 One

1.04

(0.66, 1.66)

1.06

(0.66, 1.71)

 Two

1.44

(0.94, 2.23)

1.31

(0.79, 2.14)

 Three or More

1.83

(1.24, 2.71)

1.41

(0.88, 2.25)

Hospitalized in Prior Year

1.14

(0.91, 1.43)

0.85

(0.66, 1.10)

Manage Health Care Activities

 Self-manage

Reference Group

Reference Group

  

 Co-manage

1.37

(1.05, 1.79)

1.31

(0.96, 1.79)

 Delegate

2.26

(1.73, 2.94)

2.37

(1.61, 3.47)

Source: National Health and Aging Trends Study, 2012

Bold entries are significant to P<0.05

*Adjusted for age, gender, education, self-rated health, depressive symptoms, cognitive impairment, sensory impairment, numbers of chronic medical conditions, hospitalization in prior year, and approach to managing health care activities

DISCUSSION

Drawing on newly available data from a nationally representative survey, we find that a majority of older adults self-manage their health (69.4 %) and prefer an independent or shared role when making health care decisions with both doctors (84.7 %) and family/close friends (95.9 %). However, relative to older adults who self-manage their health, those who co-manage or delegate health care activities desire a less active role in health care decision-making. Among older adults who delegate health care activities to family or close friends, 30.3 % prefer to leave health care decisions to their doctor and 21.7 % prefer to leave health care decisions to family and close friends. Some study findings give reason for pause. We found that nearly four in ten older adults report that managing health care activities is sometimes or often hard for them, sometimes or often hard for their family members, that health care activities get delayed or don’t get done, or that these activities are cumulatively too much to do. Thus, findings suggest that the experience of treatment burden imposed by our current health care system is far from rare. Collectively, study findings provide important insight regarding the meaning of person-centered and family-centered care, and raise clinical practice, quality measurement, and policy implications.

Our finding that the overwhelming majority of older adults prefer to participate actively in health care decisions is notable and diverges from a literature that has generally portrayed older adults as passive and disengaged in health care decision-making. Prior studies have emphasized age-based differences in decision-making preferences by comparing older adults with working-age adults,10 , 11 or by focusing on targeted subgroups of older adults with low-literacy or poor health.12 , 15 Our results corroborate findings from a recent systematic review indicating a trend toward greater patient preferences for active participation in health care decision-making,28 and qualitative studies reporting substantial diversity in older adults’ decision-making preferences.15 , 29 , 30

This study provides new insight regarding the context in which many older adults manage their health, engage in health care decision-making, and experience health care demands. Emerging evidence that patients commonly elect to involve family or close friends in routine or difficult treatment decisions20 , 31 33 has prompted elaborations of shared decision-making models that explicitly include family.20 , 21 These are the first national data to specifically elicit decision-making preferences of older adults that extend beyond their doctor, and we find that a substantial one-third of older adults prefer to share or leave health care decisions to family members and close friends. Equally important, however, is that nearly half of older adults who co-manage or delegate management of health activities prefer to make health care decisions independently. The heterogeneity of older adults’ decision-making preferences suggests that attaining person-centered and family-centered care will require a greater appreciation of the diversity of individual preferences for active engagement in care. Findings support recommendations for proactive and systematic elicitation of individuals’ wishes regarding the inclusion of family and close friends who may be present during a visit or at the bedside, in medical decision-making.34 , 35

Poor health and delegation of health care activities to others were most strongly associated with aspects of treatment burden related to managing health activities. The clinical relevance of treatment burden has been established for consequential outcomes such as adherence to prescribed treatments, quality of life, and health services utilization.13 , 22 , 36 38 That aspects of burden associated with managing health was more commonly experienced by persons in worse health underscores the practical importance of incorporating individual perspectives and preferences in prioritization of possible treatment and preventive regimens by balancing evidence of clinical benefit with minimizing burdens.39 41 Current delivery and reimbursement structures fail to support providers’ ability to comprehensively deliberate with patients about the risks and benefits of alternative treatment options and preventive strategies.42 , 43 Engaging in shared decision-making to prioritize treatments for a given person is likely to take more time—not less—and is less amenable to standard protocol.4 , 5 , 41

Findings from this study and others6 , 44 suggest a role for family perspectives in the measurement of treatment burden and in discussions about prioritization of care. “Burden” associated with undertaking health care management activities has been defined as a meaningful concept to both patients7 , 14 , 16 , 44 and family caregivers.6 , 45 At times, there may be a tradeoff between these perspectives. Although health care professionals have a clear responsibility to maximize benefits and minimize harms and burden to patients who are under their care, their responsibility to involved family and close friends of patients in their care is less obvious—and in fact has been a point of longstanding debate.45 , 46 Some patients state a fear of being or becoming burdensome to their families as a worry that may factor in decisions.47 How to optimally balance patient and family perspectives in the measurement of constructs such as patient and family engagement, shared decision-making, or treatment burden has yet to be defined; this study highlights the importance of such work, as well as the need for evidence-based strategies that better support individuals with complex health needs as well as their family and close friends.4 , 48

As in any survey, results are subject to constraints of the questions that were asked, and the interpretation and validity of participant responses. Questions to assess health care decision-making preferences and treatment burden were developed based on existing literature, and were devised for broad population relevance and feasible administration within a national survey. This emphasis varies from the prevailing evidence base that has focused on decision-making preferences and experiences of care with a specific health condition,13 , 22 , 38 clinical situation,36 , 37 or medical encounter,14 , 28 although measures to ascertain these constructs are evolving.2 , 49 , 50 Study findings are limited to older adults’ perspectives, and do not encompass perspectives of family members and close friends who may share or assume responsibility for management of health care activities. Systematic elicitation of perspectives of involved family and close friends to complement the perspectives of patients has been raised as a consideration in patient-reported outcomes and performance measurement.51 53 As individuals without the capacity to self-report their preferences and experiences with care are particularly vulnerable and susceptible to receiving contradictory, fragmented, and burdensome care,34 , 54 devising methods that incorporate perspectives of knowledgeable informants is necessary to a credible population-based quality measurement enterprise. More broadly, eliciting perspectives of family or close friends involved in managing health care activities6 , 9 and health care decision-making8 , 20 , 34 merits consideration, given they may also experience burdens associated with care.6 , 45

In its vision of a high performing, high value health care system, the National Quality Strategy has articulated priorities of making care safer by reducing harm, ensuring that each person and family are engaged as partners in care, and promoting effective communication and coordination of care.55 Findings from this study confirm that person-centered and family centered care is not an abstract concept, but is rather the actual context in which health care activities are managed, decisions made, and care experienced for many older adults, particularly those with more complex health needs. Our results indicate that for some, person-centered and family-centered care encompasses the active involvement of family and close friends. For others, person-centered and family-centered care may imply efforts to minimize treatment burden. Collectively, results indicate that strategies to deliver and measure person-centered and family-centered care must be flexible to respect diverse decision-making preferences, minimization of treatment burden, and support of the broader social context with which many older adults undertake health care activities.

Notes

Acknowledgements

Contributors

We gratefully acknowledge Judith Kasper for her guidance in the application of survey weights to the National Health and Aging Trends Study sampling frame, and we thank the NHATS Steering Committee for selection of the “Engagement in Health Care" supplemental module.

Funders

This study was supported by National Institute of Mental Health grant K01MH082885 (JLW) and the Paul Beeson Career Development Award Program: National Institute on Aging 1K23AG032910, AFAR, The John A. Hartford Foundation, The Atlantic Philanthropies, The Starr Foundation and an anonymous donor (CMB). The sponsor of this research was not involved in its study concept or design, recruitment of subjects or acquisition of data, data analysis or interpretation, or in the preparation of this manuscript.

Prior Presentation

None.

Author’s Contributions

1) substantial contributions to conception and design (JLW and CMB), or acquisition of data (JLW), or analysis and interpretation of data (JLW and CMB; 2) drafting the article (JLW) or revising it critically for important intellectual content (JLW and CMB); and 3) final approval of the version to be published (JLW and CMB). Dr. Wolff had full access to all of the data in the study and takes responsibility for the integrity of the data and accuracy of the data analysis.

Conflict of Interest

The authors declare that they do not have a conflict of interest.

REFERENCES

  1. 1.
    Berwick DM. What 'patient-centered' should mean: confessions of an extremist. Health Aff. 2009;28:w555–w565.CrossRefGoogle Scholar
  2. 2.
    NQF. Final report: addressing performance measure gaps in person-centered care and outcomes; 2014 August 15, 2014.Google Scholar
  3. 3.
    Tinetti ME, Fried TR, Boyd CM. Designing health care for the most common chronic condition–multimorbidity. JAMA. 2012;307:2493–2494.PubMedCentralPubMedGoogle Scholar
  4. 4.
    Patient-centered care for older adults with multiple chronic conditions: a stepwise approach from the american geriatrics society: american geriatrics society expert panel on the care of older adults with multimorbidity. J Am Geriatr Soc. 2012;60:1957-68.Google Scholar
  5. 5.
    Boyd C, Darer J, Boult C, Fried L, Boult L, Wu A. Clinical practice guidelines and quality of care for older patients with multiple comorbid diseases: implications for pay for performance. JAMA. 2005;294:716–724.CrossRefPubMedGoogle Scholar
  6. 6.
    Giovannetti ER, Wolff JL, Xue QL, et al. Difficulty assisting with health care tasks among caregivers of multimorbid older adults. J Gen Intern Med. 2011.Google Scholar
  7. 7.
    Boyd C, Wolff J, Giovannetti E, et al. Health care task difficulty among older adults with multimorbidity. Med Care. 2014;52:S118–S125.PubMedCentralCrossRefPubMedGoogle Scholar
  8. 8.
    Wolff J, Roter D. Family presence in routine medical visits: a meta-analytical review. Soc Sci Med. 2011;72:823–831.PubMedCentralCrossRefPubMedGoogle Scholar
  9. 9.
    IOM. Retooling for an aging America: building the health care workforce. Washington, DC: The National Academies Press; 2008.Google Scholar
  10. 10.
    Levinson W, Kao A, Kuby A, Thisted R. Not all patients want to participate in decision making. A national study of public preferences. J Gen Intern Med. 2005;20:531–535.PubMedCentralCrossRefPubMedGoogle Scholar
  11. 11.
    Zikmund-Fisher B, Couper M, Singer E, et al. The DECISIONS study: a nationwide survey of United States adults regarding 9 common medical decisions. Med Decis Making. 2010;30:20S–34S.CrossRefPubMedGoogle Scholar
  12. 12.
    Naik AD, Street RL, Jr., Castillo D, Abraham NS. Health literacy and decision making styles for complex antithrombotic therapy among older multimorbid adults. Patient Educ Couns. 2011.Google Scholar
  13. 13.
    Gallacher K, Morrison D, Jani B, et al. Uncovering treatment burden as a key concept for stroke care: a systematic review of qualitative research. PLoS Med. 2013;10:e1001473.PubMedCentralCrossRefPubMedGoogle Scholar
  14. 14.
    Eton DT, Elraiyah TA, Yost KJ, et al. A systematic review of patient-reported measures of burden of treatment in three chronic diseases. Patient Relat Outcome Meas. 2013;4:7–20.PubMedCentralCrossRefPubMedGoogle Scholar
  15. 15.
    Elkin EB, Kim SH, Casper ES, Kissane DW, Schrag D. Desire for information and involvement in treatment decisions: elderly cancer patients’ preferences and their physicians’ perceptions. J Clin Oncol Off J Am Soc Clin Oncol. 2007;25:5275–5280.CrossRefGoogle Scholar
  16. 16.
    Gallacher KI, Montori VM, May CR, Mair FS. Chapter 8: treatment burden and multimorbidity. In: Mercer SW, Salisbury C, Fortin M, eds. ABC of Multimorbidity. Hoboken: Wiley; 2014.Google Scholar
  17. 17.
    Kasper JD, Freedman VA. National health and aging trends study user guide: rounds 1 & 2, beta release. Baltimore: Johns Hopkins University School of Public Health; 2013.Google Scholar
  18. 18.
    Montaquila J, Freedman VA, Edwards B, Kasper JD. National Health and Aging Trends Study (NHATS) Round 1 Sample Design and Selection. Baltimore: Johns Hopkins University School of Public Health; 2012.Google Scholar
  19. 19.
    Montaquila J, Freedman VA, Spillman BC, Kasper JD. National health and aging trends study technical paper #6: development of round 2 survey weights. Baltimore: Johns Hopkins University School of Public Health; 2014.Google Scholar
  20. 20.
    Price EL, Bereknyei S, Kuby A, Levinson W, Braddock CH 3rd. New elements for informed decision making: a qualitative study of older adults’ views. Patient Educ Couns. 2012;86:335–341.PubMedCentralCrossRefPubMedGoogle Scholar
  21. 21.
    Legare F, Stacey D, Pouliot S, et al. Interprofessionalism and shared decision-making in primary care: a stepwise approach towards a new model. J Interprof Care. 2011;25:18–25.PubMedCentralCrossRefPubMedGoogle Scholar
  22. 22.
    Vijan S, Hayward R, Ronis D, Hofer T. Brief report: the burden of diabetes therapy: implications for the design of effective patient-centered treatment regimens. J Gen Intern Med. 2005;20:479–482.PubMedCentralCrossRefPubMedGoogle Scholar
  23. 23.
    Townsend A, Hunt K, Wyke S. Managing multiple morbidity in mid-life: a qualitative study of attitudes to drug use. BMJ. 2003;327:837.PubMedCentralCrossRefPubMedGoogle Scholar
  24. 24.
    Bayliss E, Ellis J, Steiner J. Seniors’ self-reported multimorbidity captured biopsychosocial factors not incorporated into two other data-based morbidity measures. J Clin Epidemiol. 2008.Google Scholar
  25. 25.
    Kroenke K, Spitzer R, Williams J. The patient health questionnaire-2: validity of a two-item depression screener. Med Care. 2003;41:1284–1292.CrossRefPubMedGoogle Scholar
  26. 26.
    Galvin JE, Roe CM, Xiong C, Morris JC. Validity and reliability of the AD8 informant interview in dementia. Neurology. 2006;67:1942–1948.CrossRefPubMedGoogle Scholar
  27. 27.
    Kasper J, Freedman V, Spillman B. Classification of Persons by Dementia Status in the National Health and Aging Trends Study: Technical Paper #5. Baltimore: Johns Hopkins University School of Public Health; 2013.Google Scholar
  28. 28.
    Chewning B, Bylund CL, Shah B, Arora NK, Gueguen JA, Makoul G. Patient preferences for shared decisions: a systematic review. Patient Educ Couns. 2012;86:9–18.PubMedCentralCrossRefPubMedGoogle Scholar
  29. 29.
    Bastiaens H, Van Royen P, Pavlic DR, Raposo V, Baker R. Older people’s preferences for involvement in their own care: a qualitative study in primary health care in 11 European countries. Patient Educ Couns. 2007;68:33–42.CrossRefPubMedGoogle Scholar
  30. 30.
    Belcher V, Fried T, Agostini J, Tinetti M. Views of older adults on patient participation in medication-related decision making. J Gen Intern Med. 2006;21:298–303.PubMedCentralCrossRefPubMedGoogle Scholar
  31. 31.
    Morton R, Tong A, Howard K, Snelling P, Webster A. The views of patients and carers in treatment decision making for chronic kidney disease: systematic review and thematic synthesis of qualitative studies. BMJ. 2010;340:c112.PubMedCentralCrossRefPubMedGoogle Scholar
  32. 32.
    Smith SK, Dixon A, Trevena L, Nutbeam D, McCaffery KJ. Exploring patient involvement in healthcare decision making across different education and functional health literacy groups. Soc Sci Med. 2009;69:1805–1812.CrossRefPubMedGoogle Scholar
  33. 33.
    Ho A. Relational autonomy or undue pressure? Family’s role in medical decision-making. Scand J Caring Sci. 2008;22:128–135.CrossRefPubMedGoogle Scholar
  34. 34.
    Torke AM, Sachs GA, Helft PR, et al. Scope and outcomes of surrogate decision making among hospitalized older adults. JAMA Intern Med. 2014.Google Scholar
  35. 35.
    Levine C, Halper D, Rutberg J, Gould DA. Engaging family caregivers as partners in transitions. New York, NY: United Hospital Fund; 2013.Google Scholar
  36. 36.
    Walter LC, Eng C, Covinsky KE. Screening mammography for frail older women: what are the burdens? J Gen Intern Med. 2001;16:779–784.PubMedCentralCrossRefPubMedGoogle Scholar
  37. 37.
    Fried TR, Bradley EH, Towle VR, Allore H. Understanding the treatment preferences of seriously ill patients. N Engl J Med. 2002;346:1061–1066.CrossRefPubMedGoogle Scholar
  38. 38.
    Gallacher K, May CR, Montori VM, Mair FS. Understanding patients’ experiences of treatment burden in chronic heart failure using normalization process theory. Ann Fam Med. 2011;9:235–243.PubMedCentralCrossRefPubMedGoogle Scholar
  39. 39.
    Montori VM, Brito JP, Murad MH. The optimal practice of evidence-based medicine: incorporating patient preferences in practice guidelines. JAMA. 2013;310:2503–2504.CrossRefPubMedGoogle Scholar
  40. 40.
    May C, Montori VM, Mair FS. We need minimally disruptive medicine. BMJ. 2009;339:b2803.CrossRefPubMedGoogle Scholar
  41. 41.
    Reuben DB, Tinetti ME. Goal-oriented patient care–an alternative health outcomes paradigm. N Engl J Med. 2012;366:777–779.CrossRefPubMedGoogle Scholar
  42. 42.
    Yarnall KS, Pollak KI, Ostbye T, Krause KM, Michener JL. Primary care: is there enough time for prevention? Am J Public Health. 2003;93:635–641.PubMedCentralCrossRefPubMedGoogle Scholar
  43. 43.
    Ostbye T, Yarnall KS, Krause KM, Pollak KI, Gradison M, Michener JL. Is there time for management of patients with chronic diseases in primary care? Ann Fam Med. 2005;3:209–214.PubMedCentralCrossRefPubMedGoogle Scholar
  44. 44.
    Tran VT, Montori VM, Eton DT, Baruch D, Falissard B, Ravaud P. Development and description of measurement properties of an instrument to assess treatment burden among patients with multiple chronic conditions. BMC Med. 2012;10:68.PubMedCentralCrossRefPubMedGoogle Scholar
  45. 45.
    Adelman RD, Tmanova LL, Delgado D, Dion S, Lachs MS. Caregiver burden: a clinical review. JAMA. 2014;311:1052–1060.CrossRefPubMedGoogle Scholar
  46. 46.
    Physicians and family caregivers. A model for partnership. Council on Scientific Affairs, American Medical Association. JAMA J Am Med Assoc. 1993;269:1282-4.Google Scholar
  47. 47.
    Cahill E, Lewis L, Barg F, Bogner H. "You don’t want to burden them": older adults’ views on family involvement in care. J Fam Nurs. 2009;15:295–317.PubMedCentralCrossRefPubMedGoogle Scholar
  48. 48.
    Kelly K, Reinhard S, Brooks-Danso A. Professional partners supporting family caregivers. Am J Nurs. 2008;108:6–12.CrossRefPubMedGoogle Scholar
  49. 49.
    Mair FS, May CR. Thinking about the burden of treatment. BMJ. 2014;349:g6680.CrossRefPubMedGoogle Scholar
  50. 50.
    Tran VT, Harrington M, Montori VM, Barnes C, Wicks P, Ravaud P. Adaptation and validation of the Treatment Burden Questionnaire (TBQ) in English using an internet platform. BMC Med. 2014;12:109.PubMedCentralCrossRefPubMedGoogle Scholar
  51. 51.
    Cella D, Hahn EA, Jensen SE, Butt Z, Nowinski CJ, N. R. Methodological issues in the selection, administration, and use of patient-reported outcomes in performance measurement in health care settings. Retrieved from http://www.qualityforum.org/Projects/n-r/Patient-Reported_Outcomes/Patient-Reported_Outcomes.aspx#t=2&s=&p=4%7C5%7C3%7C2%7C.
  52. 52.
    Deutsch A, Smith L, Gage B, Kelleher C, Garfinkel D. Patient-reported outcomes in performance measurement: commissioned paper on PRO-based performance measures for healthcare accountable entities: prepared for the national quality forum; 2012 October 22, 2012.Google Scholar
  53. 53.
    Giovannetti ER, Reider L, Wolff JL, et al. Do older patients and their family caregivers agree about the quality of chronic illness care? Int J Qual Health Care J Int Soc Qual Health Care / ISQua. 2013;25:515–524.CrossRefGoogle Scholar
  54. 54.
    Mitchell SL, Teno JM, Kiely DK, et al. The clinical course of advanced dementia. N Engl J Med. 2009;361:1529–1538.PubMedCentralCrossRefPubMedGoogle Scholar
  55. 55.
    Working for quality: 2013 Annual progress report to Congress: National Strategy for Quality Improvement in Health Care. 2013. (Accessed 3/13/2015, at http://www.ahrq.gov/workingforquality/.)

Copyright information

© Society of General Internal Medicine 2015

Authors and Affiliations

  1. 1.Department of Health Policy and ManagementJohns Hopkins Bloomberg School of Public HealthBaltimoreUSA
  2. 2.Division of Geriatric Medicine and Gerontology, Department of MedicineJohns Hopkins University School of MedicineBaltimoreUSA

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