During 2002, PC-HEART worked with the American Academy of Hospice and Palliative Medicine (AAHPM), the Population-based Palliative Care Research Network (PoPCRN), the National Hospice Work Group and the National Hospice and Palliative Care Organization (NHPCO) in an important effort to characterize and begin to improve care for persons dying from heart failure.

During 2002, PC-HEART worked with the American Academy of Hospice and Palliative Medicine (AAHPM), the Population-based Palliative Care Research Network (PoPCRN), the National Hospice Work Group and the National Hospice and Palliative Care Organization (NHPCO) in an important effort to characterize and begin to improve care for persons dying from heart failure.

Background

Heart Failure is a major cause of chronic illness and death in the United States, yet presently patients with heart failure receive hospice care at the end of their lives infrequently. Heart failure is the diagnosis for approximately 10% of hospice patients nationwide, though in some agencies it represents about a third of patients. A broad spectrum of services may be offered to patients in hospice with heart failure, though these services seem to vary from agency to agency.

Methods

Hospice medical directors from each agency in the country were invited via email and bulletins to participate in a survey to identify current care for patients with heart failure in hospice, including the spectrum of treatments & services provided, staff training and resources, as well as the barriers to care.

Results

70 medical directors completed the survey from 33 states, with 28 (40) characterized as urban, 28 (40) suburban and 14 (20) rural.

Of respondents 50 (84

) were not-for-profit, 9 (13) were part of a regional or national hospice chain, 24 (34) were part of a healthcare system or community hospital and 3 (4) part of an academic medical center.

Mean average daily census (ADC) in the agencies was 128 patients (10-1700), 80

(0-100) of patients receive care in their home and 9 (2-30) of the census are patients with a primary diagnosis of HF.

Average length of stay (LOS) in the agencies was 39 days (7-98) and average LOS for HF patients was 60 days (15-150).

Our sample had responses from a greater percentage of rural hospices and not-for-profit agencies and a shorter LOS than national data.

Medical director specialty was Family medicine (16

), Internal medicine (27), Palliative medicine (24) and other (including geriatrics and heme-onc).

Nine (13) reported fellowship training in HF management and 44 (62) had received continuing medical education about HF.

Comments

1. Erin Donaho — 25 September 2005 - 00:41

   I think that this survey is timely but there are still many questions I have.
   1. Do hospice providers perceive a need/benefit in learning about EOL (end of life) HF management?
   2. Are hospice providers open to discussing EOL care using a different chronic disease trajectory?
   3. What about the actual hospice care providers—the nurses? EOL HF management may appear to be more “aggressive” than traditional hospice care.
   This is a great start!
   VITAS Hospice Texas is interested in collaborating with the Texas Heart Institute in assessing, evaluating, and investigating better ways to bridge the palliative care to hospice gap in terms of EOL HF management. We are in the very preliminary stages of this initiative and would welcome any thoughts/feedback.
   Erin Donaho Texas Heart Institute

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