This study is maintained and distributed by the Health and Medical Care Archive (HMCA). HMCA is the official data archive of the Robert Wood Johnson Foundation.

National Hospice Study: Patient and Facility Data, [1980-1983] (ICPSR 8466)

Principal Investigator(s):


The purpose of the National Hospice Study was to examine the impact of hospice care on the quality of life of patients and their families and the health care cost incurred by patients. The National Hospice Study consists of two distinct, but interrelated, primary data collection components. The first relates to patient level studies of the costs incurred by patients and their families during the final phases of terminal cancer as well as the quality of life that they experienced during this period. The second component of the study relates to comparisons of the hospices that had received special demonstration funding from the Health Care Financing Adminstration for reimbursement of costs incurred by Medicare patients and those that had not. To address the issue of the desirability of reimbursing for hospice under Medicare, data from a large number of hospice and nonhospice patients were gathered. Patients were identified via the sites of care serving them, both hospice and nonhospice. Three types of data were collected: (1) facility level characteristics for a sample of all hospices nationwide, (2) census of intake and discharge characteristics for all patients served by those hospices during the study period, and (3) an extensive interview schedule regarding the quality of care and adequacy of Medicare reimbursement programs was conducted in both hospice and nonhospice settings with a sample of those patients fulfilling certain selection criteria (as well as their primary care person and family).

Access Notes

  • One or more data files in this study are set up in a non-standard format, such as card image format. Users may need help converting these files before they can be used for analysis.

  • These data are freely available.


DS0:  Study-Level Files
DS1:  SPSS-X Input File - Download All Files (21.2 MB)
DS2:  SPSS-X Display File - Download All Files (21.4 MB)
DS3:  Medical Record Abstract Form (Rec 16) - Download All Files (22.2 MB)
DS4:  Bereavement Interview (Rec 15) - Download All Files (22.5 MB)
DS5:  Follow-up Principal Care Person Interview (Rec 13) - Download All Files (21.5 MB)
DS6:  Follow-up Patient Interview (Rec 12) - Download All Files (24.6 MB)
DS7:  Initial Patient Interview (Rec 10) - Download All Files (23.1 MB)
DS8:  Initial Principal Care Person Interview (Rec 11) - Download All Files (23 MB)
DS9:  Principal Care Person Assessment (Rec 14) - Download All Files (25.6 MB)
DS10:  Physician Survey (Rec 17) - Download All Files (21.5 MB)
DS11:  Dates, Refusals, and Special Code Variables (Rec 35) - Download All Files (27.8 MB)
DS12:  Intake/Discharge Form (Rec 919) - Download All Files (25.9 MB)

Study Description


Greer, David, and Vincent Mor. National Hospice Study: Patient and Facility Data, [1980-1983]. ICPSR08466-v1. Ann Arbor, MI: Inter-university Consortium for Political and Social Research [distributor], 1988.

Persistent URL:

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This study was funded by:

  • United States Department of Health and Human Services. Health Care Financing Administration
  • Robert Wood Johnson Foundation
  • John A. Hartford Foundation

Scope of Study

Subject Terms:   health care costs, hospices, patient care, patients, terminal care, terminal illnesses

Geographic Coverage:   United States

Time Period:  

  • 1980--1983

Date of Collection:  

  • 1980-10-01--1983-03-31

Data Types:   survey data

Data Collection Notes:

SPSS input files and display files are available in machine-readable form for these data files.


Sample:   Nonrandom sample of hospice and nonhospice sites including 26 demonstration hospices, 12 non-demonstration hospices and 9 conventional care settings. A complete census for patient intake-discharge data was obtained, and patients were randomly selected for follow-up interviews.

Data Source:

personal interviews, and self-enumerated forms

Restrictions: Health Care Financing Administration cost data cannot be released to the public for reasons of confidentiality. The ICPSR did not receive this type of data from the principal investigators.


Original ICPSR Release:  

Version History:

  • 2006-01-12 All files were removed from dataset 13 and flagged as study-level files, so that they will accompany all downloads.
  • 2006-01-12 All files were removed from dataset 13 and flagged as study-level files, so that they will accompany all downloads.

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