The title of this blog was inspired by a remark that was made to Susan Stamberg NPR reporter, by a man in his
seventies attending an art program designed for Alzheimer’s patients with his wife. Many health care professionals, and family
caregiver advocates have heard similar remarks. It raises numerous complex questions for
|Too often couplehood
is invisible to health care practitioners, and ignored in current health care
reform discussions. The spousal/intimate
partner relationship is fundamentally different from the relationship between
an individual and other family members or close friends who may be providing
care. It has unique legal, economic,
intimate (emotional and sexual) and social aspects. ||Too often couplehood
is invisible to health care practitioners, and ignored in current health |
A growing body of research— gradually becoming
better known and getting increasing media attention— demonstrates that the
quality of a couple’s relationship can profoundly affect and be affected by the
physical and emotional health of each individual over their life span (Staton
& Ooms, 2011, & 2012). Our
Wingspread conference participants made numerous recommendations about how to
implement a couple focus across all aspects of health care. They agreed that it
is in the care of the chronically ill where the pay off of adopting a couple-focus
could be most significant in terms of increasing the quality of care and reducing
health care costs.
The couple relationship intersects with health care
throughout the course of chronic illness, from the moment when the initial
diagnosis is received, throughout the often protracted and bumpy course of
managing treatment (when the patient is still largely independent). The
relationship assumes even more importance at the caregiving stage when the
partner’s health is severely compromised, other diseases may co-occur, and
assistance from spouse or other caregiver is increasingly required for daily
functioning. Spouses and partners indeed
function as family caregivers, but they are so much more, and their
relationship affects the course of a chronic illness long before "caregiving’
in the current medical sense becomes an issue.
Health care systems need to recognize that at all these
stages a strong couple relationship can be the health care professional’s best
ally; an unsafe, unstable and emotionally destructive relationship is a major
health risk. A systems paradigm
maintains that when an individual adult becomes seriously ill or disabled, the
couple needs to be viewed as the unit of treatment (if there is no partner, then
other family members). What this means
in practice will depend on the severity and stage of the illness. Yet the
official medical establishment continues to operate within an individualistic
paradigm. For example, astonishingly the
new Institute of Medicine report on Living Well with Chronic Illness (IOM,
2012) pays no attention to the spousal/partner/or family caregiver’s role.
Changing family demographics—the decline of marriage— is often cited as
one of the reasons for ignoring the power of the couple relationship. Yet many chronic illnesses or conditions begin
in mid-life—diabetes, MS, heart-disease, cancer, HIV/AIDS—when two thirds of
adults are married. A recent Census
report provides the numbers: In 2010 70%
of men age 55-64 and nearly 71 % over 70 years are married. Women are less
likely to be married: 61.2% of 55-64 year, and 41.6% of over 65 year old women
are married (U.S. Census Bureau, 2010).
If committed cohabiting partners, including GLBT couples, were included
the proportion of adults married or with a partner would be even larger. These
numbers strongly suggest that health care providers should be aware that it is more likely than not that their
chronically ill patient has a spouse. (No national data is available on the
marital/partner status of those diagnosed with chronic illness.)
The family caregiving community has made laudable efforts to be inclusive
of all those (spouses relatives, friends etc) who provide care to the chronically
ill, frail and old. The dominant model
of family caregiving is to serve elderly patients, and the majority of these
are indeed elderly single women, and for
the majority of them their caregiver is an adult child.. In the process however
the specific issues that are unique to the large numbers of spouses or
committed partners providing increasing levels of assistance to their
chronically ill partner are seldom addressed.
Recent trials of psycho-educational interventions designed to improve
partner communication and assistance in cancer and other chronic illness are
showing promise of improving both patient and partner health (Porter et al.
2011; Baucom, 2012; Scott, Halford & Ward, 2004). Meanwhile numerous
innovations are underway to improve the quality and cost effectiveness of
health care: for example efforts to improve the management of care transitions,
adherence to treatment protocols, coordinate care for those with multiple
conditions, prevent unnecessary rehospitalizations (bounce-backs), and
establish medical homes. Couple-focused approaches should be viewed as
complementary to those focused on family caregivers more generally.
These innovations offer a window of opportunity to integrate couple
relationship information, education and other
couple-focused practice and management
tools in current reforms and to find
out, as seems very likely, whether they do help improve health care quality and reduce costs.
We invite readers of this blog to share examples of actual, or proposed practices
or system changes in the primary care of chronic illness that exemplify taking
a couple perspective. To jump-start this
conversation here are a few suggested changes in practice at different stages
of chronic illness, but they could be
adapted to be used in health care more generally:
- In the initial medical examinations routinely collect and record
information about the spouse/partners and his/her own health status; obtain permission
to actively involve the partner in the patient’s care whenever it would be
- Medicare now reimburses practitioners more if they conduct an Annual
Wellness Exam (Center for Medicare &
Medicaid Services, 2011) The exam is to
include an assessment of the individual’s functioning ability and level of
safety in the home. We propose the CMS
circular should also require that if they learn that the patient is receiving
assistance with medications or ADL, they find out who provides the patient with
assistance, and if that person is a spouse/partner (or other relative), and what
is the general status of their health.
- In the treatment and management of chronic or serious illness, routinely
invite the spouse/partner to participate in diagnostic discussions, planning
for discharge and involve the partner in explanations of post-discharge
home-based treatment protocols.
- Provide the couple with written information (or CDs. DVDs) about how
the chronic illness may affect the legal, economic, and intimate aspects of their
relationship. Make referrals to additional education and support services
designed to address these issues, such as the National MS Family Matters
program (Thompson, 2011).
D., H., Porter, L.S., Kirby, J.S., Hudepohl, J. (2012) Couple-Based
Interventions for Medical Problems, Behavior
Medicare and Medicaid Services. Annual
Wellness Visit, Circular MM 7079.
of Medicine (2012). Living Well with Chronic Illness: A Call for Public Health Action.. http://www.ncbi.nlm.nih.gov/pubmed/22304879 http://www.nap.edu/catalog.php?record_id=
Porter, L.S., Keefe, F.J., Garst, J., Baucom, D.H., McBride,
C.M., McKee, D.C., Sutton, L., Carson, K., Knowles., V., Ruble, M., Scipio, C.
(2011) Caregiver-assisted coping skills training for lung cancer: Results of a
randomized clinical trial. Cancer, 115 (S18), 4326-4338.http://www.jpsmjournal.com/article/S0885-3924%2810%2900528-2/abstract
Scott, J.L., Halford, K.W., & Keefe, F.J. (2009). A couple-based
intervention for female breast cancer. Psycho-oncology,18 (3), 276-83. http://www.ncbi.nlm.nih.gov/pubmed/18702064
Staton, J., Shuy,
R., & Byock, I. (2000). A Few Months to Live: Different Paths to
Life's End. Washington, D.C., Georgetown
University Press. http://www.press.georgetown.edu.
Staton, J., & Ooms, T.
and Relationship Factors in Health: Implications for Improving Health Care
Quality and Reducing Costs.
Issue Brief, National Healthy Marriage
to PDF is coming)
Staton, J., & Ooms, T.
Important is Going on Here!" Making Connections Between Marriage, Relationship
Quality and Health: Implications for Research and Healthcare
Strategies and Practice. Proceedings Report of the 2008 Wingspread
Conference. National Healthy Marriage Resource Center. http://www.healthymarriageinfo.org.(Link
to PDF is coming)
Thompson, S., Roeder, J., Koch, K., Thomas, J. (2011). Effectiveness of a Relationship Enrichment
Program on Couples Living with Multiple Sclerosis Denver,
CO, National Multiple Sclerosis Society. (Submitted for publication). Available
upon request from Kimberly.firstname.lastname@example.org.(waiting
Bureau (2010) Marital Status: 2010
American Community Survey 1-Year Estimates http://factfinder2.census.gov/faces/tableservices/jsf/pages/productview.xhtml?pid=ACS_1
Theodora Ooms, a social
worker and family therapist has worked for thirty years in Washington DC
to integrate a family systems perspective into federal and state policy and
programs. She was a participant in the founding CFHA Wingspread conference in
1993 and is very happy to be reconnected.
Staton, has her doctorate in counseling psychology, and currently works as
a marriage and family therapist and couples educator in Montana. She is the co-author of A Few
Months to Live: Different Paths to Life’s End.
In 2008 Ooms and
Staton coordinated a three day invitational conference at Wingspread designed
to critically review the research on the connections between marriage and couple
relationships and health, and make recommendations for changes in health care
practice and policy.