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Also posted on The Collaborative Family Healthcare Association's website.

It is seldom that family-centered health care professionals get an opportunity to directly influence national health care policy.  Alerted by Theodora Ooms and Jana Staton, several members of CFHA recently saw an opening when Senators Ron Wyden (D-OR) and Johnny Isakson (R-GA) introduced the Better Care, Lower Cost Act on Jan 15, 2014.   (A companion bill, HR 3890 was introduced in the House.) This bi-partisan, bi-cameral legislation is aimed at providing better, more coordinated and integrated care at lower cost to the millions of Medicare beneficiaries with multiple chronic conditions. (In 2010, 68% of Medicare enrollees suffered from two or more chronic conditions and accounted for 93% of Medicare spending annually.)  The Act amends the Medicare Program to set up a new model of financing and delivering services dubbed the Better Care Program, to create more effective networks of integrated, multidisciplinary health teams. These teams are aimed at keeping chronically ill patients as healthy as possible in their own homes and communities. However, the Act as introduced does not mention spouse or family caregivers, or consider them as an integral part of the health care team, serving as the “backbone or glue” of the long term/chronic illness care system.

Seeing this opportunity to educate national health policy leaders about this critical component of health care, Frank de Gruy, Susan McDaniels, Barry Jacobs, John Rolland and Bill Doherty enthusiastically joined Ooms, Staton  and Mary Myrick, of the National Healthy Marriage Resource Center (NHMRC) to sign a three-page letter of comments to the Senators, pointing out the bill’s failure to acknowledge the critical role of spousal and family caregivers in the prevention, care and treatment of the chronically ill.  The letter included a separate list of recommended changes in the legislative text to promote collaboration with spousal and family caregivers, identify caregivers in medical records, and conduct caregiver assessments along with the patient's in the Welcome to Medicare and annual Wellness visit. These suggestions also include setting up a national working group to develop curricula for training health care professionals in how to collaborate with family members.

As their letter points out, family caregivers are spouses, partners, adult children, siblings, friends and neighbors who provide many kinds of support, assistance and, increasingly, help with medical procedures so as to enable millions of persons to remain living in their homes and communities.  The term "family caregiver" however obscures the unique legal, emotional and social characteristics of caregiving between spouses.  Spousal presence and influence on chronic illness prevention, care and treatment is much more common than generally acknowledged. In fact as the 2010 Census shows, the majority of those 65 to 75 years are still living with a married partner in the home. And if cohabiting partners (heterosexual and same sex) were included the numbers would be larger. (Even among those older than 75, 38% of women and 73% of men still live with a spouse, as Ooms and Staton point out in a 2012 CFHA blog post).   For many Medicare patients, therefore, the spouse is the most likely day-to-day caregiver; some competent and willing, others unable or uncooperative, but in either case, a direct influence on patient health.

As Frank deGruy pointed out at the 2008 Wingspread Conference on Making Connections Between Relationship Quality, Marriage and Health (report written in 2012), sponsored by the NHMRC, "Illness is individual; health is always social." If we're going to improve health outcomes and lower costs for the Medicare population by preventing or reducing serious chronic illness, better care needs to include collaboration with the patient's most intimate partner or close family member, both for the sake of the patient and for the sake of the well-documented health consequences for family caregivers.

Senator Wyden is the new Chairman of the powerful Senate Finance Committee and he is known for his passionate interest in improving care for the chronically ill and his ability to work across partisan lines.  No one expects this bill to be enacted soon and it will go through a lot of changes, but it could be an initial step to significant Medicare reform.   In our communications with several leading health policy experts, they agreed that the absence of any mention of family caregivers in the Act is a major drawback, and something that will certainly get attention eventually. And if Medicare opens the door to substantial collaboration with spouses and family as part of health care for chronic illness in seniors, the potential for even greater progress in illness prevention and care with younger patients is enormous.  Fortunately, CFHA's 2014 Conference in Washington DC "From Fragmentation to Integration" is coming at a perfect time for members to make their voices heard about the crucial role that intimate partners and families can play in a truly integrated health care system.

The letter to the Hill was initially drafted by Ooms and Staton, co-coordinators of the Wingspread Conference on Marriage, Couple Relationships and Health sponsored by the NHMRC. (De Gruy, McDaniels and Doherty were key presenters at this conference) is available here.