Congestive heart failure (CHF) and chronic obstructive pulmonary disease (COPD) are among the most common causes of death in U.S. adults, yet they have received relatively little attention in the hospice or palliative care literature. End of life care for those with CHF and COPD is now listed by the Institute of Medicine as one of its Priority Areas for National Action. Both illnesses have an uncertain prognosis that poses a major barrier to shared decision-making and the timely initiation of end of life care. Advance care planning has largely failed to improve end of life care in these illnesses because patients are unwilling or unable to formulate plans and clinicians delay implementing these plans. Therefore, an alternative approach is necessary that takes into account patients' evolving understanding of prognosis and their willingness to consider the end of their lives. In this project, we will interview patients with end-stage CHF and COPD and their spouses and clinicians to formulate a """"""""grounded theory"""""""" of the effects of prognostic understanding on decision-making. We will utilize a qualitative design, separately interviewing patients and spouses and clinicians after a CHF or COPD hospitalization. In our revised proposal, we have omitted our follow-up interviews in order to expand our sample size and maximize the diversity of our subjects. We have also expanded our clinician interview to assess for congruence between patient and clinician understanding of prognosis and reasons for the transmission or omission of prognostic information. Focus groups with patients, spouses and clinicians will also be used to assess the trustworthiness of our theory and to validate a Needs Assessment Instrument and a Patient-Centered Interview Guide developed and piloted during this study.
Specific Aims 1 To characterize the understanding of and adaptation to prognosis by patients with end stage heart disease (NYHA Class Ill-IV CHF) and end stage lung disease (COPD with FEV< 35%). A. What factors are associated with discordance between patient and clinician understanding of prognosis? How does the presence or absence of prognostic information from the patient's clinician affect patient decision-making? B. How does the spouse or significant other influence the understanding of prognosis and patient decision-making about end of life care? C. How does patient adaptation and decision-making evolve 6 months after a hospitalization? D. Are there significant differences] How does prognostic understanding and decision making differ between patients with CHF and those with COPD? 2] To generate a grounded theory of end of life clinical decision making by patients with CHF and COPD 3] To develop and pilot test a Patient-Centered Interview Guide to facilitate shared decision-making for patients with end stage CHF and COPD. This guide will be personalized based on a Needs Assessment Instrument (also developed during this study) that identifies patients' sense of readiness, importance and confidence in making end of life decisions. Feasibility and acceptability of this Instrument and Guide will be tested in the current study Distribution of these needs in the population and effectiveness of the Instrument and the Guide at improving end of life care will be tested in a future study.
| Imes, Christopher C; Dougherty, Cynthia M; Pyper, Gail et al. (2011) Descriptive study of partners' experiences of living with severe heart failure. Heart Lung 40:208-16 |
