End-of-life issues in genetic disorders: Literature and research directions

Genetics in Medicine

Volumn 4, Issue 5, 2002, Pages 366-372

  Knebel, Ann R ^a,b   Hudgings, Carole ^a  

^a NATIONAL INSTITUTE OF NURSING RESEARCH   (United States)

^b Building 31 ^*  (United States)

Author keywords

Death; Dying; End of life; Genetic disorders; Inheritance

Indexed keywords

ATTITUDE TO HEALTH; BECKER MUSCULAR DYSTROPHY; BEREAVEMENT; DEATH; DUCHENNE MUSCULAR DYSTROPHY; ETHICS; FAMILY RELATION; GENETIC DISORDER; HEALTH CARE COST; HEREDITARY SPINAL MUSCULAR ATROPHY; HUMAN; PALLIATIVE THERAPY; PATIENT CARE; QUALITY OF LIFE; REVIEW; SOCIAL SUPPORT; DEATH AND EUTHANASIA; GENETIC PREDISPOSITION; GENETICS AND REPRODUCTION; PSYCHOLOGICAL ASPECT; TERMINAL CARE; TERMINALLY ILL PATIENT;

DEATH AND EUTHANASIA; GENETICS AND REPRODUCTION;

GENETIC DISEASES, INBORN; GENETIC PREDISPOSITION TO DISEASE; HUMANS; PALLIATIVE CARE; SOCIAL SUPPORT; TERMINAL CARE; TERMINALLY ILL;

EID: 0036730951     PISSN: 10983600     EISSN: None     Source Type: Journal    
DOI: 10.1097/00125817-200209000-00008     Document Type: Review

References (17)

1. Mack SA, Berman LC. A group for parents of children with fatal genetic illnesses. Am J Orthopsychiatry 1988;58:397-404 .
2. Parker D, Maddocks I, Stern LM. The role of palliative care in advanced muscular dystrophy and spinal muscular atrophy. J Paediatr Child Health 1999;35:245-250.
3. Ramer-Chrastek J. Hospice care for a terminally ill child in the school setting. J Sch Nurs 2000;16:52-56.
4. Wolfe J. Hospice support for families facing multiple deaths of children. Am J Hosp Palliat Care 1997;14:224-227.
5. Hilton T, Orr R, Perkin R, Ashwal S. End of life care in Duchenne muscular dystrophy. Pediatr Neurol 1993;9:165-177.
6. Tonelli MR. End-of-life care in cystic fibrosis. Curr Opin Pulm Med 1998;4:332-336.
7. Livneh H, Antonak R, Maron S. Progeria: medical aspects, psychological perspectives, and intervention guidelines. Death Stud 1995;19:433-452.
8. Sakakihara Y, Masaya K, Kim S, Oka A. Long-term ventilator support in patients with Werdnig-Hoffmann disease. Pediatr Int 2000;42:359-363.
9. Labbe E. Emotional states and perceived family functioning of caregivers of chronically ill children. Psychol Rep 1996;79:1233-1234.
10. Christian BJ, D'Auria J, Jennifer P, Moore CB. Playing for time: adolescent perspectives of lung transplantation for cystic fibrosis. J Pediatr Health Care 1999;13:120-125.
11. Ferrin M, Happ MB, Kagan SH. Palliative care and lung transplantation: conflict or continuum? Nursing Rounds at the University of Pennsylvania 2001;101:61-66.
12. Dagi TF. Compassion, consensus and conflict: should caregivers' needs influence the ethical dialectic? J Clin Ethics 1992;3:214-218.
13. Mitchell I, Nakielna E, Tullis E, Adair C. Cystic fibrosis: end stage care in Canada. Chest 2000;118:80-84.
14. Robinson WM, Ravilly S, Berde C, Wohl ME. End of life care in cystic fibrosis. Pediatrics 1997;100:205-209.
15. Man GCW, Hsu K, Sproule BJ. Effect of alprazolam on exercise and dyspnea in patients with chronic obstructive pulmonary disease. Chest 1986;90:832-836.
16. Young IH, Daviskas E, Keena VA. Effect of low dose nebulized morphine on exercise endurance in patients with chronic lung disease. Thorax 1989;44:387-390.
17. President's Commission for the Study of Ethical Problems in Medicine and Biomedical and Behavioral Research. Deciding to forgo life-sustaining treatment. Washington, DC: US Government Printing Office, 1983.