In the years that Martha Abshire Saylor worked as a critical care nurse, she saw firsthand what can unfold when patients without advance care plans undergo procedures they may never have wanted.
“The lack of a documented advance care plan can result in painful and life-extending medical interventions that often don’t ensure quality of life or even that a patient leaves the hospital,” says Abshire Saylor, the Mary Ousley CIM Scholar, who specializes in advanced heart failure and palliative care. As an example, she remembers performing CPR — which can cause significant painful injury — on a patient of advanced age in multiple organ failure.
“Currently, recommendations in advanced care planning in those with cognitive impairment are based on clinical expertise without the evidence from actual conversations with patients and families.” – Abshire Saylor
Such experiences have inspired Abshire Saylor in her clinical research efforts to make advanced care planning more widely accessible and effective in representing a patient’s desires and values, particularly as patients age and experience cognitive decline.
“Currently, recommendations in advanced care planning in those with cognitive impairment are based on clinical expertise without the evidence from actual conversations with patients and families,” she notes.
To address this shortcoming, Abshire Saylor led a recent study — published in Alzheimer’s & Dementia — in adults age 80 and older, which analyzed transcripts of advanced care planning discussions (see sidebar). These discussions included the patients’ care partners (typically family members) and ran for about 35 minutes. Of the 88 conversations analyzed, 15 participants had normal cognition, 13 had mild cognitive impairment and 60 had severe impairment (dementia).
“Being family-centered and inclusive of family members in health care makes advanced care planning conversations so much easier, particularly at the end of life — for patients, caregivers and clinicians.” – Abshire Saylor
In analyzing the conversations, Abshire Saylor and her team identified key themes that can be used to inform best practice. One is that though cognitive impairment can inhibit a patient’s participation in these discussions, individuals with dementia are still able to contribute. A second key insight: Care partners play a critical role in supporting advanced care planning across the spectrum of cognitive impairment.
For Abshire Saylor, whose clinical research has long emphasized the importance of supporting family caregivers of patients with serious illness, this second finding came as no surprise. “Being family-centered and inclusive of family members in health care makes advanced care planning conversations so much easier, particularly at the end of life — for patients, caregivers and clinicians,” she says. “We found that caregivers wanted to honor their loved one’s wishes if they were known.”
Mary Catherine Beach, co-director of the Center for Humanizing Medicine and a Mary Gallo CIM Scholar, praises Abshire Saylor’s approach and notes that her clinical research is central to the mission of the CHM.
“What is so beautiful about this work is that Martha is able to balance respect for autonomy with the lived reality of evolving cognitive impairment,” says Beach. “In doing so, she shows how clinicians can work collaboratively with patients and their families to preserve as much capacity as possible while also respecting the patient and family more holistically.”
“What is so beautiful about this work is that Martha is able to balance respect for autonomy with the lived reality of evolving cognitive impairment.” – Mary Catherine Beach
While discussions around advanced care planning involve many procedural questions — If your heart stops, do you want CPR? Defibrillation? Would you ever want to receive a feeding tube? — Abshire Saylor believes the most crucial decisions center on naming a surrogate decisionmaker in the event the patient can’t communicate their wishes.
Moreover, “It’s crucial for caregivers to understand the level of permission they’ve been given,” she explains. “On one end are patients who say: ‘I feel strongly about what I want and I want you to execute that.’ On the other end of the spectrum are people who say, ‘I understand that my medical situation may change in a way that I can’t imagine; I trust that you’ll do your best and I give you permission to do what you think is right by me.’”
This project is just one of several that Abshire Saylor has been pursuing and she is pleased to note that Johns Hopkins Community Physicians has committed to expanding services in advanced care planning throughout the health system.
CHM Co-Director Scott Wright, Mary Gallo CIM Scholar and holder of the Anne Gaines and G. Thomas Miller Professorship, sees such efforts as being important and timely.
“This study is a wonderful reminder for clinicians to partner with all patients — and caregivers,” says Wright, who is also director of CIM’s Miller Coulson Academy of Clinical Excellence.
“While this is a best practice for every clinical decision, it is especially critical for advanced care planning. Although there can be pressures in contemporary medicine that may conflict with patiently listening, this paper highlights the value of taking the time to hear and understand the perspectives of older adults with cognitive impairments.”
