Hopes, expectations, and informational needs in patients undergoing advanced heart failure therapy evaluations
Hanna-Riikka Lehto, MD, PhD,
Yidi Wang, MD, PhD,
Katharine A. Manning, MD, MBE,
Joshua R. Lakin, MD,
Lauren K. O’Shea, CNP,
Michael J. Landzberg, MD,
Ariela R. Orkaby, MD, MPH,
Akshay S. Desai, MD, MPH,
James A. Tulsky, MD,
Nelia Jain, MD,MA,
Rachelle E. Bernacki, MD, MSc
Affiliations
Hanna-Riikka Lehto, MD, PhD
Department of Psychosocial Oncology and Palliative Care, Dana Farber Cancer Institute, Boston, Massachusetts; Harvard Medical School, Boston, Massachusetts; Corresponding author: Hanna-Riikka Lehto, MD, PhD, Department of Psychosocial Oncology and Palliative Care, Dana Farber Cancer Institute, 450 Brookline Ave, Boston, MA 02215.
Yidi Wang, MD, PhD
Harvard Medical School, Boston, Massachusetts
Katharine A. Manning, MD, MBE
Division of Cardiovascular Medicine, Dartmouth Hitchcock Medical Center, Lebanon, New Hampshire; Dartmouth Geisel School of Medicine, Lebanon, New Hampshire
Joshua R. Lakin, MD
Department of Psychosocial Oncology and Palliative Care, Dana Farber Cancer Institute, Boston, Massachusetts; Division of Palliative Medicine, Brigham and Women’s Hospital, Boston, Massachusetts; Harvard Medical School, Boston, Massachusetts
Lauren K. O’Shea, CNP
Department of Psychosocial Oncology and Palliative Care, Dana Farber Cancer Institute, Boston, Massachusetts; Division of Palliative Medicine, Brigham and Women’s Hospital, Boston, Massachusetts
Michael J. Landzberg, MD
Department of Psychosocial Oncology and Palliative Care, Dana Farber Cancer Institute, Boston, Massachusetts; Division of Palliative Medicine, Brigham and Women’s Hospital, Boston, Massachusetts; Harvard Medical School, Boston, Massachusetts; Division of Cardiovascular Medicine, Brigham and Women’s Hospital, Boston, Massachusetts; Department of Cardiology, Boston Children’s Hospital, Boston, Massachusetts
Ariela R. Orkaby, MD, MPH
Harvard Medical School, Boston, Massachusetts; New England GRECC (Geriatric Research, Education, and Clinical Center), VA Boston Healthcare System, Boston, Massachusetts; Division of Aging, Brigham and Women’s Hospital, Harvard Medical School, Boston, Massachusetts
Akshay S. Desai, MD, MPH
Harvard Medical School, Boston, Massachusetts; Division of Cardiovascular Medicine, Brigham and Women’s Hospital, Boston, Massachusetts
James A. Tulsky, MD
Department of Psychosocial Oncology and Palliative Care, Dana Farber Cancer Institute, Boston, Massachusetts; Division of Palliative Medicine, Brigham and Women’s Hospital, Boston, Massachusetts; Harvard Medical School, Boston, Massachusetts
Nelia Jain, MD,MA
Department of Psychosocial Oncology and Palliative Care, Dana Farber Cancer Institute, Boston, Massachusetts; Division of Palliative Medicine, Brigham and Women’s Hospital, Boston, Massachusetts; Harvard Medical School, Boston, Massachusetts
Rachelle E. Bernacki, MD, MSc
Department of Psychosocial Oncology and Palliative Care, Dana Farber Cancer Institute, Boston, Massachusetts; Division of Palliative Medicine, Brigham and Women’s Hospital, Boston, Massachusetts; Harvard Medical School, Boston, Massachusetts
Background: Patients undergoing evaluation for advanced heart failure therapies (AHT) are at a critical juncture of their illness. Guidelines recommend shared decision-making with patients and caregivers; however, the approach and content of these discussions are unknown. Methods: Patients referred to a specialty palliative care service during AHT evaluation between October 2018 and September 2022 were identified from electronic health care records. Goals of care conversations documented in an advance care planning module were analyzed for participants, content, and timing before the transplant selection committee meeting. Primary outcomes included the prevalence of documented hopes, worries, shared prognostic communication, illness understanding, treatment expectations, and information preferences. Patients were followed for a minimum of 6 months to evaluate secondary processes and clinical outcomes. Results: Ninety-four patients (mean age 52.8 years, 76.6% male) met the criteria. Most patients (97.9%, n = 92) had illness understanding documented. In initial discussions, 76.3% (n = 71) hoped to “live longer” and 67.7% (n = 63) to “be independent”; thematic analysis supported these hopes with 91.0% of patients expecting “better functionality.” Most patients preferred multimodal information and communication. During follow-up, 27.7% (n = 26) had treatment decisions deferred at the initial committee presentation, and 43.6% (n = 41) were reviewed at multiple selection committee meetings. By the end of the study period, 53.2% (n = 50) underwent one or more AHT and 24.5% (n = 23) had died. Conclusions: Patients undergoing the AHT evaluation process face considerable uncertainty. A standardized approach by a specialty palliative care service elicits patients’ illness understanding, hopes, worries, treatment expectations, and information preferences to promote shared decision-making at this critical time.
