Date of Award

5-1999

Document Type

Dissertation

Degree Name

Doctor of Philosophy (PhD)

Department

Teaching & Learning

Abstract

The purpose of this research study was to understand the decision making process when seeking hospice care. The objectives were to identify the decision maker for the patient when seeking hospice care, why they were seeking hospice care, who initiated the referral, if the decision maker was aware they can self refer to hospice care, and the benefits of hospice care for the patient and family.

The study is a qualitative and quantitative descriptive study utilizing a telephone survey design as described by Dillman (1978). One hundred patients who had been referred to Hospice of the Red River Valley (HRRV) between February 1998 and September 1998 were asked to identify the decision maker for participation in the study. All decision makers had an equal chance of participating in the study.

Findings from the study suggest that patients are referred to hospice by physicians most often (32%) with health care professionals suggesting hospice care to patients in 81% of the cases. Admission to hospice care was first considered within one week or less by 65% of the patients. The discussion was initiated by a physician (20%), the final decision to seek hospice care was made by the patient (41%), and the decision maker participating in the study most was a daughter (31%). Awareness of hospice is quite high as 96% of the participants reported having heard of hospice prior to his/her family member becoming ill.

Reported benefits of hospice care included support, comfort care, volunteer visits, education, Medicare benefits, pain management, and symptom control, as well as being allowed to die at home. In addition, the 24 hour crisis care and bereavement follow-up were also mentioned as being of benefit to families. Barriers to hospice care included the admission criteria for Medicare as well as Medicare regulations, not understanding the referral process, physicians not being supportive of hospice care, believing hospice was only available for persons with cancer, not knowing he/she was dying, and not the criteria necessary for being hospice appropriate. Seventy-five percent of the participants did not know he/she could self refer.

Recommendations were given for further study and for action by appropriate groups. To have improved curriculum, it appears principals need additional education in curriculum areas.

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