Hostname: page-component-cd9895bd7-dk4vv Total loading time: 0 Render date: 2024-12-31T15:09:45.178Z Has data issue: false hasContentIssue false
  • English
  • Français

Final decisions: How hospice enrollment prompts meaningful choices about life closure

Published online by Cambridge University Press:  13 August 2013

Deborah P. Waldrop  and
Mary Ann Meeker
Deborah P. Waldrop*
Affiliation:
University at Buffalo School of Social Work, Buffalo, New York
Mary Ann Meeker
Affiliation:
University at Buffalo School of Nursing, Buffalo, New York
*
Address Correspondence and reprint requests to: Deborah P. Waldrop, University at Buffalo School of Social Work, 685 Baldy Hall, Buffalo, NY 14260. E-mail: [email protected]
Get access Rights & Permissions [Opens in a new window]

Abstract

Objective:

The purpose of this study was to explore and describe decisions that faced newly enrolled hospice patients and their caregivers after hospice enrollment.

Method:

An exploratory, descriptive, cross-sectional design was employed using qualitative methods. In-depth in-person interviews were conducted with current hospice patients (n = 35) and caregivers (n = 45) from 53 families.

Results:

The decision to enroll in hospice was a critical juncture on the trajectory of a terminal illness that allowed patients and their families an opportunity to consider subsequent tasks that were important for life closure. A typology of five decisions is presented: (1) operationalized advance care planning (ACP): a renewed focus on decisions about care at life's end; (2) surrogate decision-making: caregivers begin making both informal and formal decisions for the dying person; (3) meaning-making: the foreshortened time brings into focus decisions about seeing special people, attending events, and creating memories; (4) Location of death: decisions about whether the person wants to and can remain at home to die; and (5) final acts: decisions about funeral arrangements, wills, and leaving a legacy become central. ACP was found to exist on a continuum that ranged from absent ACP, dormant ACP, simplified ACP to activated ACP. Hospice enrollment became a catalyst for reactivating discussion of end-of-life choices.

Significance of results:

Hospice enrollment prompts the need to consider subsequent important choices that contribute to meaningful life closure, are central to the completion of a family relationship, and may influence adaptation in bereaved caregivers. It is important for clinicians to recognize that well-timed encouragement to consider and explore the use of hospice services, although it may indeed diminish hope for cure or recovery, simultaneously offers an opportunity to engage with important and time-sensitive developmental tasks.

Keywords

Hospice decision-makingEnd of lifeLife closureHuman development
Type
Original Articles
Information
Palliative & Supportive Care , Volume 12 , Issue 3 , June 2014 , pp. 211 - 221
Copyright
Copyright © Cambridge University Press 2013 

Access options

Get access to the full version of this content by using one of the access options below. (Log in options will check for institutional or personal access. Content may require purchase if you do not have access.)

References

REFERENCES

Anderson, F., Downing, G.M., Hill, J., et al. (1996). Palliative performance scale (PPS): A new tool. Journal of Palliative Care, 12, 5–11.CrossRefGoogle ScholarPubMed
Astrow, A.B., Sood, J.R., Nolan, M.T., et al. (2008). Decision-making in patients with advanced cancer compared with amyotrophic lateral sclerosis. Journal of Medical Ethics, 34, 664–668.CrossRefGoogle ScholarPubMed
Back, A.L., Young, J.P., McCown, E., et al. (2009). Abandonment at the end of life from patient, caregiver, nurse, and physician perspectives: Loss of continuity and lack of closure. Archives of Internal Medicine, 169, 474–479.Google Scholar
Byock, I. (1996). The nature of suffering and the nature of opportunity at the End of Life. Clinics in Geriatric Medicine, 12, 237–251.CrossRefGoogle ScholarPubMed
Dumont, I., Dumont, S. & Mongeau, S. (2008). End-of-life care and the grieving process: Family caregivers who have experienced the loss of a terminal-phase cancer patient. Qualitative Health Research, 18, 1049–1061.Google Scholar
Glaser, B. & Strauss, A. (1965). Awareness of Dying. Chicago: Aldine.Google Scholar
Good, P., Sneesby, L., Higgins, I., et al. (2011). Medical officers in acute care settings: Their views on medically assisted hydration at the end of life. Journal of Palliative Care, 27, 303–309.Google Scholar
Grainger, M.N., Hegarty, S., Schofield, P., et al. (2010). Discussing the transition to palliative care: evaluation of a brief communication skills training program for oncology clinicians. Palliative & Supportive Care, 8, 441–447.Google Scholar
Hancock, K., Clayton, J.M., Parker, S. M., et al. (2007). Discrepant perceptions about end-of-life communication: A systematic review. Journal of Pain & Symptom Management, 34, 190–200.Google Scholar
Hirschman, K.B., Corcoran, A.M., Straton, J.B., et al. (2010). Advance care planning and hospice enrollment: Who really makes the decision to enroll? Journal of Palliative Medicine, 13, 519–523.Google Scholar
Jo, S., Brazil, K., Lohfeld, L., et al. (2007). Caregiving at the end of life: Perspectives from spousal caregivers and care recipients. Palliative & Supportive Care, 5, 11–17.Google Scholar
Knight, S.J. & Emanuel, L. (2007). Processes of adjustment to end-of-life losses: A reintegration model. Journal of Palliative Medicine, 10, 1190–1198.Google Scholar
Kramer, B.J., Kavanaugh, M., Trentham-Dietz, A., et al. (2010). Predictors of family conflict at the end of life: The experience of spouses and adult children of persons with lung cancer. Gerontologist, 50, 215–225.Google Scholar
Levin, T.T., Li, Y., Weiner, J.S., et al. (2008). How do-not-resuscitate orders are utilized in cancer patients: Timing relative to death and communication-training implications. Palliative & Supportive Care, 6, 341–348.CrossRefGoogle ScholarPubMed
Lorenz, K.A., Lynn, J., Dy, S.M., et al. (2008). Evidence for improving palliative care at the end of life: A systematic review. Annals of Internal Medicine, 148, 147–159.Google Scholar
Marsella, A. (2009). Exploring the literature surrounding the transition into palliative care: A scoping review. International Journal of Palliative Nursing, 15, 186–189.Google Scholar
Meeker, M.A. & Jezewski, M. A. (2004). A voice for the dying. Clinical Nursing Research, 13, 326–342.Google Scholar
Meeker, M.A. & Jezewski, M.A. (2005). Family decision making at end of life. Palliative & Supportive Care, 3, 131–142.Google Scholar
Miller, S.C., Kinzbrunner, B., Pettit, P. et al. (2003). How does the timing of hospice referral influence hospice care in the last days of life? Journal of the American Geriatrics Society, 51, 798–806.Google Scholar
Padgett, D.K. (2008). Qualitative Methods in Social Work Research, 2nd ed.Thousand Oaks: Sage Publications.Google Scholar
Philip, J., Gold, M., Schwarz, M., et al. (2009). Patients' views on decision making in advanced cancer. Palliative & Supportive Care, 7, 181–185.CrossRefGoogle ScholarPubMed
Schulman-Green, D., McCorkle, R., Curry, L., et al. (2004). At the crossroads: Making the transition to hospice.. Palliative & Supportive Care, 2, 351–360.Google Scholar
Steinhauser, K.E., Alexander, S.C., Byock, I.R., et al. (2009). Seriously ill patients' discussions of preparation and life completion: An intervention ot assist with transition at the end of life. Palliative and Supportive Care, 7, 393–404.Google Scholar
Strada, E. & Breitbart, W. (2009). Addressing the psychological and psychiatric domain of palliative care. Primary Psychiatry, 16, 23–24.Google Scholar
Teno, J.M., Shu, J.E., Casarett, D., et al. (2007). Timing of referral to hospice and quality of care: Length of stay and bereaved family members' perceptions of the timing of hospice referral. Journal of Pain & Symptom Management, 34, 120–125.Google Scholar
Townsend, A.L., Ishler, K.J., Shapiro, B.M., et al. (2010). Levels, types, and predictors of family caregiver strain during hospice home care for an older adult. Journal of Social Work In End-Of-Life & Palliative Care, 6, 51–72.Google Scholar
Vig, E.K., Starks, H., Taylor, J.S., et al. (2006). How do surrogate decision makers describe hospice? Does it matter? American Journal of Hospice & Palliative Medicine, 23, 91–99.Google Scholar
Waldrop, D.P., Kramer, B.J., Skretny, J.A., et al. (2005). Final transitions: Family caregiving at the end of life. Journal of Palliative Medicine, 8, 623–638.Google Scholar
Witt-Sherman, D. (1998). Reciprocal suffering: The need to improve caregivers' quality of life through palliative care. Journal of Palliative Medicine, 1, 357–366.Google Scholar
Wittenberg-Lyles, E., Goldsmith, J. & Ragan, S. (2011). The shift to early palliative care: A typology of illness journeys and the role of nursing. Clinical Journal of Oncology Nursing, 15, 304–310.Google Scholar
World HealthOrganization (2010) WHO Definition of Palliative Care. http://www.who.int/cancer/palliative/definition/en/ (Accessed on August 7, 2013).Google Scholar
Zaider, T. & Kissane, D. (2009). The assessment and management of family distress during palliative care. Current Opinion in Supportive & Palliative Care, 3, 67–71.Google Scholar