In her Last Days, Beloved Former First Lady showed Why Healthcare Decision-Making is Personal, Powerful
Family literacy is the cause that perhaps most defined Barbara Bush during and after her husband’s presidency, but in the days before her death Tuesday at age 92 the feisty former first lady helped draw attention to another vital movement in America: the importance of person-centered care.
Her family’s announcement Sunday that Mrs. Bush had chosen “comfort care” – and was stopping treatment for health problems that included congestive heart failure and chronic obstructive pulmonary disease – felt like a possible tipping point in the national effort to put patients at the center of their own healthcare decisions.
A key hurdle in that effort has been getting people with serious illness and their families to articulate and document their wishes and goals for end-of-life care. A beloved American icon – the wife of one president and the mother of another – together with her family choosing care that reflected the way she lived was a powerful and much-needed example for us all.
Palliative Care and Hospice – They’re Not the Same Thing
Person-centered care has been defined as “a philosophy of care built around the needs of the individual and contingent upon knowing the unique individual through an interpersonal relationship” (Fazio, 2018). That approach is especially crucial when patients experience serious or life-limiting illness and face myriad treatment options, many of which can lead to psychosocial and physical distress.
Mrs. Bush, when first diagnosed years ago with CHF and COPD, could have immediately benefited from palliative care, a patient-centered model of care focused on easing suffering, managing symptoms and improving quality of life, alongside curative treatment. The phrasing of this week’s announcement – which tied “comfort care” to eschewing treatment – caused palliative care advocates to worry that it might reinforce misconceptions that palliative care is only for those who have stopped treatment.
Instead, it appears the comfort care Mrs. Bush and her family pursued was more likely hospice care, which also focuses on easing suffering and improving quality of life, but is limited to patients with a prognosis of less than six months who have declined life-extending treatment.
Greater Awareness Means More Discussion
Whether Mrs. Bush received hospice or palliative care, sharing her decision so publicly put the discussion of person-centered care – and the importance of end-of-life decision making – exactly where it should be: on the radar of individuals, families, and communities who must engage in those discussions.
Dr. Joanne Lynn, a renowned palliative care researcher and director of the program to improve elder care at Altarum Institute, pointed out the power of Mrs. Bush’s example in comments to Kaiser Health News:
“It makes perfectly good sense at her age, with her failing health, that she would say at some point, ‘Life’s been good, and while you always want more, it’s enough,’” said Lynn, who worked with Mrs. Bush years ago when she was a congressional spouse volunteering at the Washington Home for chronically ill patients. “We have so few examples in visible leadership positions” of public figures promoting palliative care, Lynn said in the KHN article.
Care Managers and Person-Centered Care
In the greater healthcare system, care managers or case managers can play an important role in developing person-centered care plans for clients and patients who face medical challenges that need multidisciplinary support.
In a 2013 policy brief, “Achieving Person-Centered Care through Care Coordination,” The SCAN Foundation highlighted the key work of care managers – and why care coordination is such a critical strategy in the shift toward patient-centered care. The brief defined care coordination as “a service based on consultations and information with and among the individual, his/her providers, and family members where appropriate, facilitated by a knowledgeable and trained professional that leads to the individual obtaining the right care, in the right place, at the right time to address his/her needs with an appropriate use of resources.”
The SCAN Foundation and the California Health Care Foundation also funded Care Excellence, a major education initiative and online curriculum for care managers developed by the California State Institute for Palliative Care.