Hostname: page-component-8448b6f56d-qsmjn Total loading time: 0 Render date: 2024-04-16T02:47:24.803Z Has data issue: false hasContentIssue false

Place of death of adolescents and young adults with cancer: First study in a French population

Published online by Cambridge University Press:  13 February 2009

Sebastien Montel*
Affiliation:
Psycho-Oncology Department, Institut Curie, Paris, France
Valerie Laurence
Affiliation:
Medical Oncology Department, Institut Curie, Paris, France
Laure Copel
Affiliation:
Supportive Care Department, Institut Curie, Paris, France
Helene Pacquement
Affiliation:
Pediatric Oncology Department, Institut Curie, Paris, France
Cecile Flahault
Affiliation:
Psycho-Oncology Department, Institut Curie, Paris, France
*
Address correspondence and reprint requests to: Montel Sébastien, UPO, 25 rue d'Ulm, 75005 Paris, France. E-mail: sebastien.montel@curie.net

Abstract

Objective:

To improve the palliative care and more effectively meet the needs of young patients and their families at the end of life, the authors investigated the place of death of adolescents and young adults treated in their institution and identified some of the factors influencing the choice of place of death.

Methods:

The parents and/or partners of adolescents and young adults (15 to 25 years old) who died at Institut Curie (cancer center) between 2000 and 2003 were contacted. Twenty-one families agreed to participate in the interview between October 2005 and April 2006. Analysis of the interviews comprised a descriptive part and a thematic part.

Results:

Nineteen out of 21 (90%) families declared that they did not really choose their child's place of death due to lack of time. However, all families said that they preferred the hospital. No family attended a bereavement group after their child's death and only 3 families (14%) consulted a mental health care professional. Thematic analysis showed that representations and beliefs concerning life and death at least partly determined the family's capacity to discuss the place of death with their child.

Significance of results:

Although progress has been made over recent years in France, there is still considerable room for improvement of palliative care to more effectively meet the needs of young patients and their families at the end of life.

Type
Original Articles
Copyright
Copyright © Cambridge University Press 2009

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

Ahlner-Elmqvist, M., Jordhoy, M.S., Jannert, M., et al. (2004). Place of death: Hospital-based advanced home care versus conventional care. A prospective study in palliative cancer care. Palliative Medicine, 18, 583593.CrossRefGoogle Scholar
Annells, M. (1996). Grounded theory method: Philosophical perspectives, paradigm of inquiry and postmodernism. Qualitative Health Research, 6, 379.CrossRefGoogle Scholar
Bradshaw, G., Hinds, P.S., Lensing, S., et al. (2005). Cancer-related deaths in children and adolescents. Journal of Palliative Medicine, 8, 8695.CrossRefGoogle ScholarPubMed
Bruera, E., Russell, N., Sweeney, C., et al. (2002). Place of death and its predictors for local patients registered at a comprehensive cancer center. Journal of Clinical Oncology, 20, 21272133.CrossRefGoogle Scholar
Cantwell, P., Turco, S., Brenneis, C., et al. (2000). Predictors of home death in palliative care cancer patients. Journal of Palliative Care, 16, 2328.CrossRefGoogle ScholarPubMed
Charmaz, K. (1990). Discovering chronic illness: Using grounded theory. Social Science and Medicine, 30, 11611172.CrossRefGoogle ScholarPubMed
Chevalier-Verjus, F. (1995). A propos des étapes du mourir quelques considérations sur l'origine de la souffrance psychique et des mécanismes de defense (Considerations about the origine of psychic suffering at the end of the life). In La dimension de la souffrance psychique chez le malade douloureux chronique (The dimension of psychic suffering in chronic pain patient), Ferragut, E. (ed), p. 83. Paris: Masson.Google Scholar
Choi, K.S., Chae, Y.M., Lee, S.W., et al. (2005). Factors influencing preferences for place of terminal care and death among cancer patients and their families in Korea. Supportive Care in Cancer, 13, 565572.CrossRefGoogle ScholarPubMed
Contro, N., Larson, J., Scofield, S., et al. (2002). Family perspective on the quality of pediatric palliative care. Archives of Pediatric and Adolescent Medicine, 156, 1419.CrossRefGoogle ScholarPubMed
Feudtner, C., DiGiuseppe, D.L., & Neff, J.M. (2003). Hospital care for children and young adults in the last year of life: A population-based study. BMC Medicine, 1, 3.CrossRefGoogle Scholar
Feudtner, C., Silveira, M.J., & Christakis, D. (2002). Where do children with complex chronic conditions die? Patterns in Washington state, 1980–1998. Pediatrics, 109, 656660.CrossRefGoogle ScholarPubMed
Fukui, S., Fukui, N., & Kawagoe, H. (2004). Predictors of place of death for Japanese patients with advanced stage malignant disease in home care settings: A nationwide survey. Cancer, 101, 421429.CrossRefGoogle ScholarPubMed
Higginson, I.J. & Thompson, M. (2003). Children and young people who die from cancer: Epidemiology and place of death in England (1995–9). British Medical Journal, 327, 478479.CrossRefGoogle Scholar
Hinds, P.S., Drew, D., Oakes, L.L., et al. (2005). End-of-life care preferences of pediatric patients with cancer. Journal of Clinical Oncology, 23, 91469154.CrossRefGoogle ScholarPubMed
Klopfenstein, K.J., Hutchison, C., Clark, C., et al. (2001). Variables influencing end-of-life care in children and adolescents with cancer. Journal of Pediatric Hematology and Oncology, 23, 481486.CrossRefGoogle ScholarPubMed
Kreicbergs, U., Valdimarsdottir, U., Onelöv, E., et al. (2004). Talking about death with children who have severe malignant disease. New England Journal of Medicine, 351, 11751186.CrossRefGoogle ScholarPubMed
Mangan, P.A., Taylor, K.L., Yabroff, K.R., et al. (2003). Caregiving near the end of life: Unmet needs and potential solutions. Palliative and Supportive Care, 1, 247259.CrossRefGoogle ScholarPubMed
Phipps, E.J. & Braitman, L.E. (2004). Family caregiver satisfaction with care at end of life: Report from the cultural variation study (CVAS). American Journal of Hospice and Palliative Medicine, 21, 340342.CrossRefGoogle ScholarPubMed
Rando, T.A. (1988). Anticipatory grief: The term is a misnomer but the phenomenon exists. Journal of Palliative Care, 4, 7073.CrossRefGoogle ScholarPubMed
Rice, P.L. & Ezzy, D. (1999). Qualitative Research Methods: A Health Focus. South Melbourne, Australia: Oxford University Press.Google Scholar
Teno, J.M., Clarridge, B.R., Casey, V., et al. (2004). Family perspectives on end-of-life care at the last place of care. JAMA, 291, 14451446.CrossRefGoogle ScholarPubMed
Van den Eynden, B., Hermann, I., Schrijvers, D., et al. (2000). Factors determining the place of palliative care and death of cancer patients. Supportive Care in Cancer, 8, 5964.CrossRefGoogle ScholarPubMed
Young, B., Dixon-Woods, M., Windridge, K.C., et al. (2003). Managing communication with young people who have a potentially life threatening chronic illness: Qualitative study of patients and parents. Bristish Medical Journal, 326, 305.CrossRefGoogle ScholarPubMed