Sally NeeleyMSW Candidate

Baylor University

Cases of the Jensons and Matthews Brief Review of Literature Methodology Findings How to Help Families Be Ready for Hospice

Future Studies

Gaps in literature related to the decision making process for hospice and end of life care

There is limited research about what makes a family ready to enroll in hospice

End of Life Communication and Involvement of Health Care Professionals

(Csikai, 2006; Cassarett, Crowley, & Hirschman, 2004)

Factors which affect hospice utilization

(Haley et., 2002; Zhang & Siminoff, 2003)

Sample of Convenience

Two focus groups -- key informants

-- family members

Three individual interviews

-- two doctors-- one pastor

16 participants• six family members

• seven participants in the key informants

• three key informant individual interviews

Gender› 5 males› 11 female

Ethnicity› 12 Caucasian› 2 African American

› 2 Hispanic

Professions› 4 nurses› 3 social workers

› 2 doctors› 1 pastor

Role of Doctor in Explaining Terminal Illness> Need face-to-face conversation

> Important how hospice is explained

> Understandable terminology

Lack of Education and Negative Perceptions› Knowing someone who utilized hospice

› Educate health care professionals

› End-of-life discussions

Religious Beliefs> Christians more willing

> Impacts decision> Minister and church community important

> Same faith= differing views

Cultural Beliefs› African American› Hispanic› Asian

Family Support*Duration of Care giving*Physical Decline*Acceptance of Terminal Illness*

*handout

Age of patient* Gender of Primary Caregiver*

Trusting relationship with doctor or hospice staff*

Previous discussion about end of life issues*

Combining qualitative methods provides more comprehensive review

Multiple factors were confirmed

Fills gap

Results can not be generalized

Group was not culturally diverse

Unable to gain information from families who did not choose hospice

Negative Perceptions--Point out support

family provides--Identify hospice as a

support--Focus on the family

strengths

Extend boundaries of support

Sole/primary caregiver?

Physical help? Concerns about progression of the illness?

Spiritual or cultural beliefs?

Comfort medications?

End-of-life issues?

Receiving help?

Impact of religious and cultural beliefs

Compare readiness to enroll compared to utilizing hospice services

Test reliability and validity of assessment tool

Quantitative research on what factors determine a family’s readiness for hospice

Casarett, D. J., Crowley, R. L., & Hirschman, K. B. (2004). How should clinicians describe hospice to patients and families? Journal of the American Geriatrics Society, 52(11), 1923-1928.

Cherlin, E., Fried, T., Prigerson, H. G., Schulman-Green, D., Johnson-Hurzeler, R., & Bradley, E. H. (2005). Communication between physicians and family caregivers about care at the end of life: When do discussions occur and what is said? Journal of Palliative Medicine, 8(6), 1176-1185.

Csikai, E. L. (2006). Bereaved hospice caregivers' perceptions of the end-of -life care communication process and the involvement of health care professionals. Journal of Palliative Medicine, 9(6), 1300-1309.

Grange, C. M., Matsuyama, R. K., Ingram, K. M., Lyckholm, L. J., & Smith, T. J. (2008). Identifying supportive and unsupportive responses of others: Perspectives of African American and caucsasian cancer patients. Journal of Psychosocial Oncology, 26 (1), 81-99.

Haley, W., Allen, R., Reynolds, S., Chen, H., Burton, A., & Gallegher -Thompson, D. (2002). Family issues in end-of-life decision making and end-of-life care. American Behavioral Scientist, 46 (2), 284-298.

Jnowiak, S. M. (1995). Bereavement experiences of African-Americans: The use of focus groups. Psy.D. Dissertation, Indiana University of Pennsylvania, United States- Pennsylvania.

Lambert, S. D. & Loiselle, C. G. (2008). Combining individual interviews and focus groups to enhance data richness. Journal of Advanced Nursing, 62(2), 228-237.

Ogle, K. S., Mavis, B. & Wyatt, G. K. (2002). Physicians and hospice care: Attitudes, knowledge, and referrals. Journal of Palliative Medicine, 5(1), 85-92.

Zhang, A. Y., & Siminoff, L. A. (2003). The role of the family in treatment decision making by patients with cancer. Oncology Nursing Forum, 30(6), 1022