“Whose Quality of Life is it anyway: The Collective Experience and Quality of Life”

Michele Battle-Fisher, MPH, MA

Doctoral student, The Ohio State University

Instructor, Wright State University

Aging & Society Conference

Graduate Scholar Award Recipient

University of California, Berkeley

November 8- 9, 2011

Overview

• Quality of Life• Influence of social networks on QOL

• Objectivity & Subjectivity in QOL• Introduction of “Collective QOL” and

Concentric Model of Health-Bound Networks

• Introduction of “Pass Back Benefit” through social networks• Ethical implications• Future directions

Quality of Life

• Health- personal experience with physical and mental domains (Muldoon et al., 1998)

• QOL- functional status versus subjective wellbeing (Muldoon et al., 1998)

• Gill & Feinstein (1994)- QOL “perceived perception”

• QOL framed as something “should have” & not as dynamic

• No solution for altering a person’s QOL and what is happening in someone’s head. (Gurland, personal communication)

Social Networks and QOL

• House et al. (1988)- social support fails to account for the social network dynamics

• Smith & Christakis (2008)- embeddedness of social support next step

• Cornwell & Waite (2009)- social isolation linked to lower self-rated health

• Lin (2000)- social resources “embedded in ties”

• Steinhauer et al. (2000)- clinical staff focus on physical, patients on mental domain during end of life

Objective & Subjective QOL

Conventional Objective QOL

•Measurement of personal function•QOL as individual•Measurement across life domains (e.g. physical, interpersonal, occupational)•Health status, functional status, quality of life used interchangeably

(Muldoon et al.,1998)

Subjective QOL •“Happiness

requirements” necessary

conditions for happiness

in a given society (McCall,1975)• Bramston et al. (2002) Intimacy, community involvement and emotional well-being domains•Individual level- loneliness•Systems level- “sense of community”

A step forward- Collective QOL

• Proposed by Battle-Fisher (2011)• Patient embedded in social network(s)• Subjective linked to involvement with patient’s

functional status• Caring others (surrogates) affected by life

state of patient• QOL originated by illness experience of

patient• Decreased physical and mental functionalities

across networks • Surrogates serve different purposes to patient

Collective QOL

• Not same as “subjective wellbeing” as surrogates’ lives are also affected by patient’s disease state• Particularly salient due to increased longevity and chronicity of older patients• Calls for unit of analysis to be at network level, not patient level (though patient is ego for social network analysis)•Not a replacement of personal QOL measure, but a necessary collective view of QOL not attended to presently

A possible application of collective QOL

“Concentric Model of Health-Bound Networks” ©

(Battle-Fisher & Mawasha, 2011)

Pass back benefit (Battle-Fisher, 2011)

Ethical implications

• Is it ethical to accept a patient’s “low” QOL objective score and a high, subjective ranking of personal or collective QOL?

• Does maintaining patient autonomy lead us to a false reality of chronic illness management?

• Should nominalization of benefit seek personal QOL benefit (bottom up) or collective QOL to trickle down to patient (top-down)? (Gusmano, personal communication)

• What of discordance in collective QOL as valued among surrogates? (Gusmano, personal communication)

Future directions

• To what extent should the surrogates be responsible for the patient’s QOL (guilt, power, self-imposed responsibility at play)?

• Nested QOL networks (overlap of illness narratives within network)

• How might utility as conceived by surrogates work?

• Does the difficult/ noncompliant patient or network affect the cycle?

Future directions

• Is there a ripple effect of influence within networks (homophily) under pass back benefit?

• How might end of life decisions be influenced by pass back?

• How might pass back fit within Concentric Model of Health-Bound Networks?(Battle-Fisher & Mawasha, 2011)

Thank you to Dr. Barry Gurland, Columbia University, Director of the

Morris W. Stroud III Center for the Study of Quality of Life

Dr. Michael Gusmano, The Hastings Center, NY

Joann Mawasha, Psy.D., Wright State MPH student

Faculty, staff and students of the Ohio State and Wright State Master of Public Health Programs

My family

Mary Anne Benner for graphics assistance

University of Illinois Common Ground Publishing

References

• Battle-Fisher, M. (2011). Whose (Quality of) Life is it anyway? Unpublished manuscript.

• Battle-Fisher, M. & Mawasha, J. (2011). Development of the Concentric Model of Health- Bound Networks: Understanding Quality of Life through the ecological model and social network theory. Unpublished manuscript.

• Bramston, P., Pretty, G. & Chipuer, H. (2002). Unravelling subjective quality of life- an investigation of individual and community determinants. Social Indicators Research. 59, 261-74.

• Cornwell, E. & Waite, L. (2009). Social disconnectiveness, perceived isolation, and health among older adults. Journal of Health and Social Behavior. 50(1), 31-48.

• Gill, T. & Feinstein, A. (1994). A critical appraisal of the quality of quality of life measurements. JAMA. 272, 619-25.

References

• House, J., Umberson, D. & Landis, K. (1988). Structures and Processes of Social Support. Annual Review of Sociology. 14, 293-318.

• Lin, N. (2000). Inequality of social capital. Contemporary Sociology. 29, 785-795.

• McCall, S. (1975). Quality of Life. Social Indicators Research. 2, 229-248.

• Muldoon, M., Barger, S., Flory, J., & Manuck, S. (1998). What are the quality of life measurements measuring? BMJ. 316, 542-5.

• Smith, K. & Christakis, N. (2008). Social networks and health. Annual Review of Sociology. 34, 405-29.

• Steinhauser, N., Christakis, N.,…& Tulsky, J. (2000). Factors considered important at the end of life by patients, family, physicians and other care providers. JAMA. 284, 2476-82.

The science of medicine. The art of healing.