Transcript Journal of Palliative Medicine, 5

Sally Neeley
MSW 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

Professions
› 5 males
› 4 nurses
› 11 female
› 3 social workers
› 2 doctors

Ethnicity
› 12 Caucasian
› 2 African
American
› 2 Hispanic
› 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