The treatment of End Stage Renal Disease (ESRD) successfully prolongs the survival of patients with kidney disease but requires that ESRD patients cope with frequent deleterious changes in their health and life situation, and shortened survival. Although the nephrology team is well-equipped to deal with the medical and technical aspects of care, it is less well-equipped to help patients with the impact of the difficult human transitions that come with dialysis and transplant treatment. Times of great challenge can also be opportunities for personal growth and healing but this often requires outside support. We need to develop new resources specifically aimed at helping ESRD patients complete important life transitions and more research on the frequency and impact of these events.
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References
1.
Canadian Organ Replacement Register, Canadian Institute for Health Information. Annual Report 2001, volume 1: dialysis and renal transplantation. Ottawa: The Register; 2001.
2.
Philips D , (ed.) Heroes: 100 stories of living with kidney failure. Montreal: Grosvenor House Press , 1998.
3.
Satir V , Banmen J , Gerber J , Gomorri M . The process of change. In The Satir model: family therapy and beyond. Palo Alto: Science and Behaviour Books , 1991: 85-119.
4.
Parkes CM . Bereavement: studies of grief in adult life. London: Penguin , 1998.
5.
White M . Re-authoring lives: interviews and essays. Adelaide: Dulwich Centre Publications , 1995.
6.
Campbell J . The hero with a thousand faces. Princeton: Princeton University Press , 1973.
7.
Gregroy DM , Way CY , Hutchinson TA , Barret BJ , Parfrey PS . Patients’ perceptions of their experience with ESRD and haemodialysis treatment . Qual Health Res1998; 8: 764-783 .
8.
Sollod RN . Beyond a sense of safety: a psychologist’s tale of serious chronic illness . Psychotherapy in Practice. 2002; 59: 1397-1409 .
9.
Pyszczynski T , Solomon S , Greenberg J . Terror management research: coping with conscious and unconscious death-related thoughts. In In the wake of 9/11: the psychology of terror. Washington: American Psychological Association , 2003: 37-70.
10.
Cassell EJ . The nature of suffering and the goals of medicine . N Engl J Med1982; 306: 639-645 .
11.
Cassell EJ . The nature of suffering and the goals of medicine. New York: Oxford University Press , 1991.
12.
Finkelstein FO , Finkelstein SH . Depression in chronic dialysis patients: assessment and treatment . Nephrol Dial Transplant2000; 15: 1911-1913 .
13.
Watnick S , Kirwin P , Mahnensmith R , Concato J . The prevalence and treatment of depression among patients starting dialysis . Am J Kid Dis2003; 41: 105-110 .
14.
Stedeford A . Hospice: a safe place to suffer?Palliat Med1987; 1: 73-74 .
15.
Kearney M . A Place of Healing: working with suffering in living and dying. Oxford: Oxford University Press , 2000.
16.
Mount BM , Kearney M . Healing and palliative care: charting our way forward . Palliat Med2003; 17: 657-658 .
17.
Mount BM . Existential suffering and the determinants of healing . Eur J Palliat Care. 2003; 10: 40-42 .
18.
Cohen SR , Boston P , Mount BM , Porterfield P . Changes in quality of life following admission to palliative care units . Palliat Med2001; 15: 363-371 .
19.
Kimmel PL , Emont SL , Newman JM , et al. ESRD patient quality of life: symptoms, spiritual beliefs, psychosocial factors, and ethnicity . Am J Kid Dis2003; 42: 713-721 .
20.
Steinhauser KE , Christaakis NA , Clipp EC , McNeilly M , McIntyre L , Tulsky JA . Factors considered important at the end of life by patients, family, physicians and other care providers . JAMA2000; 284: 2476-2482 .
21.
Fallowfield, L . Communication with the patient and family in palliative medicine. In Doyle D , Hanks G , Cherny NI , Calman K , eds Oxford Textbook of Palliative Medicine, third edition. Oxford: Oxford University Press , 2004: 101-106.
22.
Cohen LM , Germain MJ , Poppel DM . Practical considerations in dialysis withdrawal: ‘To have that option is a blessing .’ JAMA2003; 289: 2113-2119 .
23.
Perry E , Swartz R , Smith-Wheelock L , Westbrook J and Buck C . Why is it difficult for staff to discuss advance directives with chronic dialysis patients?J Am Soc Nephrol1996; 7: 2160-2168 .
24.
Lickiss JN , Turner KS , Pollock ML . The interdisciplinary team. In Doyle D , Hanks G , Cherny NI , Calman K , eds Oxford Textbook of Palliative Medicine, third edition. Oxford: Oxford University Press , 2004: 42-45.
25.
Galla JH and Renal Physicians Association/American Society of Nephrology Working Group . Clinical practice guidelines on shared decision-making in the appropriate initiation of and withdrawal from dialysis . J Am Soc Nephrol2000; 11: 1340-1342 .
26.
Moss AH for the Renal Physicians Association/American Society of Nephrology Working Group . A new clinical practice guideline on initiation and withdrawal of dialysis that makes explicit the role of palliative medicine . J Pall Med2000; 3: 253-360 .
27.
Chambers EJ , Germain M , Brown E , eds Supportive care for the renal patient. Oxford: Oxford University Press , 2004.
28.
Saunders C. Foreword . In Doyle D , Hanks G , Cherny NI , Calman K , eds Oxford Textbook of Palliative Medicine, third edition. Oxford: Oxford University Press , 2004: xxvii-xx.
29.
World Health Organization . Cancer pain relief and palliative care. 1990: 11-12.
30.
MacDonald N . Palliative medicine and modern cancer care. In Doyle D , Hanks G , Cherny NI , Calman K , eds Oxford Textbook of Palliative Medicine, third edition. Oxford: Oxford University Press , 2004: 24-48.
31.
US Renal Data System (USRDS) . Annual data report: Atlas of end-stage renal disease in the United States. Bethsda, MD: National Institutes of Health, National Institute of Diabetes and Digestive and Kidney Diseases , 2002.
32.
Mailloux LU . Initiation and withdrawal of dialysis. In Chambers EJ , Germain M , Brown E , eds Supportive care for the renal patient. Oxford: Oxford University Press , 2004.
33.
Helsing KJ , Szklo M . Mortality after bereavement . Am J Epi1981; 114: 41-52 .
34.
Kearney M . The containment of care. In A place of healing. Oxford: Oxford University Press , 2000: 85-90.
35.
Monroe B . Social work in palliative medicine. In Doyle D , Hanks G , Cherny NI , Calman K , eds Oxford Textbook of Palliative Medicine, third edition. Oxford: Oxford University Press , 2004: 1005-1034.
36.
Frankl V . Man’s search for meaning. New York: Simon & Shuster , 1959.
37.
Yalom ID . Existential psychotherapy. New York: Basic Books , 1980.
38.
Cassidy JP , Douglas JD . Cultural and spiritual aspects of palliative medicine. In Doyle D , Hanks G , Cherny NI , Calman K , eds Oxford Textbook of Palliative Medicine, third edition. Oxford: Oxford University Press , 2004: 949-960.
39.
Kissane DW. Bereavement . In Doyle D , Hanks G , Cherny NI , Calman K , eds Oxford Textbook of Palliative Medicine, third edition. Oxford: Oxford University Press , 2004: 1135-1354.
40.
Doyle L , McClure J , Fisher S . The contribution of physiotherapy to palliative medicine. In Doyle D , Hanks G , Cherny NI , Calman K , eds. Oxford Textbook of Palliative Medicine, third edition. Oxford: Oxford University Press , 2004: 1050-1056.
41.
Bray J , Cooper J . The contribution of occupational therapy to palliative medicine. In Doyle D , Hanks G , Cherny NI , Calman K , eds Oxford Textbook of Palliative Medicine, third edition. Oxford: Oxford University Press , 2004: 1035-1040.
42.
Kearney M . Mortally wounded. New York: Scribner , 1996.
43.
O’ Callaghan C . The contribution of music therapy to palliative medicine. In Doyle D , Hanks G , Cherny NI , Calman K , eds Oxford Textbook of Palliative Medicine, third edition. Oxford: Oxford University Press , 2004: 1041-1046.
44.
Kearney M . Dreamwork as earth ascending. In A Place of Healing: working with suffering in living and dying. Oxford: Oxford University Press , 2000: 111-141.
45.
Wood M . The contribution of art therapy to palliative medicine. In Doyle D , Hanks G , Cherny NI , Calman K , eds Oxford Textbook of Palliative Medicine, third edition. Oxford: Oxford University Press , 2004: 1063-1067.
46.
Friedmann , Erika The animal-human bond: health and wellness. In: Fine A , ed. Animal assisted therapy. San Diego, CA: Academic Press , 2000: 41-58.
