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Keywords

congestive heart failure, palliative care, quality of life, qualitative research, shared decision making

 

Authors

  1. Dougherty, Cynthia M. PhD, ARNP
  2. Pyper, Gail P. MA, RN
  3. Au, David H. MD, MS
  4. Levy, Wayne C. MD
  5. Sullivan, Mark D. MD, PhD

Abstract

Background: Patients with advanced heart failure (HF) have an uncertain prognosis and low rates of advance care planning and hospice use. The purpose of this study was to describe how patients view and plan for their future.

 

Methods: Twenty-four (N = 24) patients took part in a semistructured interview in which they were asked to describe their experiences in living with heart disease and their understanding and planning for their future. Interviews were transcribed and analyzed using the constant comparative method to generate a grounded theory.

 

Results: The core category, "Living with HF," encompassed the subcategories of "My Experience of HF," "Help with HF," and "My Future with HF." This article reports on "My Future with HF." Patients wanted to discuss how HF affected their future with their providers, but initiation of these discussions was difficult and the absence of discussion led to frustration. Patients did not find specific life expectancy estimates helpful in coping or planning their future care.

 

Conclusions: Patients with advanced HF do not plan well for end-of-life care and tend to drift along while vaguely hoping for the best. End-of-life care in advanced HF should address difficulties in decision making and provider communication.