Date of Award

5-2015

Degree Name

Doctor of Philosophy

Department

Interdisciplinary Health Sciences

First Advisor

Dr. Amy B. Curtis

Second Advisor

Dr. Mary Lagerwey

Third Advisor

Dr. Barbara Head

Keywords

End of life, advance directive, hope, hospice, quality of life. palliative care

Abstract

Humans, including those residing in the United States, can live in denial of their own mortality. Because of this, futile care is sometimes provided, often at great monetary expense and for little or no return in terms of quality or length of life. At least two opportunities exist for making choices regarding care at the end of life in the U.S.: completing advance directives and choosing hospice care. This dissertation consists of three studies related to this topic. The first is a quantitative study about advance directives and attitude toward death. The advance directive completion rate among adults in the United States is 18-36%. Much research has been conducted in an attempt to understand why the completion rate is not higher, but what has not been studied is the potential influence of one’s attitude toward death. Results from a survey in southwest Michigan indicated there was no association between attitude toward death and the completion of advance directives; however, mean death attitude scores differed by religiousness. The second and third studies in this dissertation are qualitative research studies related to hospice care. In the first of these, the experience of the hospice referral from the perspectives of the patient, the caregiver, and the provider showed that several issues exist. Providers reported discussing hospice earlier and more often than was noted for the patient or caregivers. Also, the needs of caregivers influence patients’ decisions about whether and when to sign on to hospice care. Caregivers may be ready for hospice care to be provided before the patient is ready. Non-hospice palliative care may be an effective means of providing both patients and caregivers the support they need prior to the last 6 months of a patient’s life. The results of the second qualitative research study showed how end of life care might be informed by the fears, sources of strength, and hopes of the hospice patient, the caregiver, and the provider. A provider who understands a patient’s and caregiver’s fears about suffering may be able to alleviate those fears in advance.

Access Setting

Dissertation-Open Access

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