Exploring the lived experience of having a terminal illness

Journal of Palliative Care

Volumn 27, Issue 1, 2011, Pages 43-52

  Kuhl, D ^a,b,c  

^a UNIVERSITY OF BRITISH COLUMBIA   (Canada)

^b UNIVERSITY OF BRITISH COLUMBIA   (Canada)

^c ST PAUL S HOSPITAL   (Canada)

Author keywords

[No Author keywords available]

Indexed keywords

ALTERNATIVE MEDICINE; ARTICLE; ATTITUDE TO DEATH; DISEASE COURSE; HUMAN; INTERPERSONAL COMMUNICATION; INTERVIEW; LIFE EVENT; PSYCHOLOGICAL ASPECT; QUALITATIVE RESEARCH; SICKNESS IMPACT PROFILE; TERMINALLY ILL PATIENT;

ATTITUDE TO DEATH; COMMUNICATION; DISEASE PROGRESSION; HUMANS; INTERVIEWS AS TOPIC; LIFE CHANGE EVENTS; QUALITATIVE RESEARCH; SICKNESS IMPACT PROFILE; TERMINALLY ILL; THERAPEUTIC TOUCH;

EID: 79959615172     PISSN: 08258597     EISSN: None     Source Type: Journal    
DOI: 10.1177/082585971102700108     Document Type: Article

References (72)

1. Kuhl DR. What dying people want: practical wisdom for the end of life. Toronto: Doubleday Canada; 2002.
2. Kuhl DR. Facing death, embracing life: understanding what dying people want. Toronto: Doubleday Canada; 2006.
3. Kuhl DR. Life matters; death matters. World Small Animal Veterinary Association (WSAVA) international lecture. Paper presented to: 26th world congress of WSAVA; August 8, 2001 ; Vancouver, British Columbia, Canada. Available from: www.wsava.org/Kuhl.htm
4. Kuhl DR. Facing death: embracing life. Can Fam Phys 2005; 51:1606-1608.
5. Kuhl DR. What dying people want. In: Chochinov HM, Breitbart W, editors. Handbook of psychiatry in palliative medicine. 2nd ed. New York: Oxford University Press; 2009.
6. Kuhl DR. Spirituality at the end of life. J Cancer Ed 2006; 21(1): 19-22. (Pubitemid 44385450)
7. Kuhl DR. Relationships and iatrogenic suffering: part I. In: Rocker G, Puntillo KA, Azoulay E, Nelson JE. Handbook for palliative care in the ICU. Oxford: Oxford University Press; 2010.
8. Kuhl DR. Relationships and iatrogenic suffering: part II. In: Rocker G, Puntillo KA, Azoulay E, Nelson JE. Handbook for palliative care in the ICU. Oxford: Oxford University Press; 2010.
9. Kuhl DR. Exploring spiritual and psychological issues at the end of life [dissertation]. [Vancouver]: University of British Columbia, 1999.
10. World Health Organization (WHO). WHO definition of palliative care. Geneva: WHO; 2010.
11. World Hearth Organization (WHO). WHO'S pain ladder. Geneva: WHO; 2010.
12. DeSandre PL, Quest TE. Management of cancer-related pain. Emerg Med Clin North Am 2009; 27(2): 179-194.
13. Hanks GW, de Conno F, Cherny N, et al. Morphine and alternative opioids in cancer pain: the EAPC recommendations. Br J Cancer 2001 ; 84(5): 587-593. (Pubitemid 32238990)
14. van Manen M. Researching lived experience: human science for an action sensitive pedagogy. Ontario: Althouse; 1990.
15. Alborn M. Tuesdays with Morrie: an old man, a young man and life's greatest lesson. New York: Doubleday; 1997.
16. Barnard B, Towers A, Boston P, et al. Crossing over narratives of palliative care. New York: Oxford University Press; 2000.
17. Bingley AF, McDermott E, Thomas C, et al. Making sense of dying: a review of narratives written since 1950 by people facing death from cancer and other diseases. Palliat Med 2006; 20(3): 183-195.
18. Bolen JS. Close to the bone: life-threatening illness and the search for meaning. New York: Simon and Schuster; 1996.
19. Byock I. Dying well: the prospect for growth at the end of life. New York: Thorndike; 1997.
20. Callahan D. The troubled dream of life: living with mortality. New York: Simon and Schuster; 1993.
21. Carter H, MacLeod R, Brander P, et al. Living with a terminal illness: patients' priorities. J Adv Nurs 2004; 45(6): 611-620. (Pubitemid 38453233)
22. Chochinov HM, Kristjanson LJ, Hack TF, et al. Burden to others and the terminally ill. J Pain Symptom Manag 2007; 34(5): 463-471. (Pubitemid 350011133)
23. Chochinov HM, Hassare T, McClement S, et al. The patient dignity inventory: a novel way of measuring dignity-related distress in palliative care. J Pain Symp Manag 2008; 36(6): 559-571.
24. Curtis RJ, Wenrich MD, Carline JD, et al. Patients' perspectives on physician skill in end-of-life care: differences between patients with COPD, cancer, and AIDS. Chest 2002; 122(1): 356-362. (Pubitemid 34754186)
25. Downey L, Engelberg RA, Curtis JR, et al. Shared priorities for the end-of-life period. J Pain Symptom Manag 2009; 37(2): 175-188.
26. Downey L, Curtis JR, Lafferty WE, et al. The Quality of Dying and Death Questionnaire (QODD): empirical domains and theoretical perspectives. J Pain Symptom Manag 2010; 39(1): 9-22.
27. Esbensen BA, Swane CE, Hallberg IR, et al. Being given a cancer diagnosis in old age: a phenomenological study. Int J Nurs Stud 2008; 45(3): 393-405.
28. Jocham HR, Dassen T, Widdershoven G, et al. Quality of life in palliative cancer patients: a literature review. J Clin Nurs 2006; 15(9): 1188-1195. (Pubitemid 44213906)
29. Emanuel LL, Alpert HR, Baldwin DC, et al. What terminally ill patients care about: toward a validated construct of patients' perspectives. J Palliat Med 2000; 3(4): 419-431. (Pubitemid 32056754)
30. Farber SJ, Egnew TR, Herman-Bertsch JL, et al. Issues in end-of-life care: patient, caregiver, and clinician perceptions. J Palliat Med 2003; 6(1): 19-31. (Pubitemid 36159780)
31. Goldsteen M, Houtepen R, Proot IM, et al. What is a good death? Terminally ill patients dealing with normative expectations around death and dying. Patient Educ Couns 2006; 64 (1-3): 378-386. (Pubitemid 44802780)
32. Hales S, Zimmermann C, Rodin G. The quality of dying and death. Arch Intern Med 2008; 168(9): 912-918. (Pubitemid 351679630)
33. Heyland DK, Rocker GM, O'Callaghan CJ, et al. Dying in the ICU: perspectives of family members. Chest 2003; 124(1): 11-12.
34. Heyland DK, Dodek P, Rocker G, et al. What matters most in end-of-life care: perceptions of seriously ill patients and their family members. CMAJ 2006; 174(5): 627-633. (Pubitemid 43341872)
35. Higginson IJ, Costantini M. Dying with cancer, living well with advanced cancer. Eur J Cancer 2008; 44(10): 1414-1424.
36. Johansson CM, Axelsson B, Danielson E. Living with incurable cancer at the end of life: patients' perceptions on quality of life. Cancer Nurs 2006; 29(5): 391-399. (Pubitemid 44483996)
37. Kelly B, Varghese FT, Burnett P, et al. General practitioners' experiences of the psychological aspects in the care of a dying patient. Palliat Support Care 2008; 6(2): 125-131.
38. Knops KM, Srinivasan M, Meyers FJ. Patient desires: a model for assessment of patient preferences for care of severe or terminal illness. Palliat Support Care 2005; 3(4): 289-299.
39. Heitkemper MM, Watkins Bruner D, Johnson JC, et al. National Institutes of Health (NIH) State-of-the-Science Conference on Improving End-of-Life Care statement, December 6-8, 2004. Washington: U.S. Department of Health and Human Services, NIH; 2004. Available from: http://consensus.nih.gov/2004/2004 EndOfLifeCareSOS024html.htm
40. Nuland S. How we die: reflections of life's final chapter. New York: Vintage; 1995.
41. Penson RT, Partridge RA, Shah MA, et al. Fear of death. Oncologist 2005; 10(2): 160-169. (Pubitemid 40261955)
42. Prince-Paul M. Understanding the meaning of social well-being at the end of life. Oncol Nurs Forum 2008; 35(3): 365-371.
43. Rollin B. Last wish. New York: Linden; 1985.
44. Selecky PA, Eliasson AH, Hall RI, et al. Palliative and end-of-life care for patients with cardiopulmonary diseases: American College of Chest Physicians position statement. Chest 2005; 128(5): 3599-3610. (Pubitemid 41698699)
45. Singh KD. The grace in dying: how we are transformed spiritually as we die. New York: HarperCollins; 1998.
46. Stedeford A. Facing death: patients, families and professionals. Oxford: Heinemann Medical; 1984.
47. Steinhauser KE, Christakis NA, Clipp EC, et al. Factors considered important at the end of life by patients, family, physicians, and other care providers. JAMA 2000; 284(19): 2476-2482.
48. Vig EK, Davenport NA, Pearlman RA. Good deaths, bad deaths, and preferences for the end of life: a qualitative study of geriatric outpatients. J Am Geriatr Soc 2002; 50(9): 1541-1548. (Pubitemid 35024647)
49. Vilhauer RP. A qualitative study of the experiences of women with metastatic breast cancer. Palliat Support Care 2008; 6(3): 249-258.
50. Webb M. The good death: the new American search to reshape the end of life. New York: Bantam; 1997.
51. Ferrell BR. To know suffering. Oncol Nurs Forum 1993; 20(10): 1471-1477.
52. Cohen SR, Bultz BD, Clarke J, et al. Dying healthy. Palliative care: a psychosocial and spiritual research agenda from the patient's perspective. A report from the National Cancer Institute of Canada (NCIC) Sociobehavioural Cancer Research Network. Toronto: NCIH; 1996 Apr.
53. Smith DW, McIntyre R. Husserl and intentionality: a study of mind, meaning, and language. Holland: Springer; 1982.
54. Birren JE, Deutchman DE. Guiding autobiography groups for older adults: exploring the fabric of life. Baltimore: Hopkins Fulfillment Service; 1991.
55. Pearsall J, editor. The new Oxford dictionary of English. New York: Oxford University Press; 1998.
56. Lafferty WE, Downey L, McCarty RL, et al. Evaluating CAM treatment at the end of life: a review of clinical trials for massage and meditation. Complement Ther Med 2006; 14(2): 100-112. (Pubitemid 43827451)
57. Pierce SF. Improving end-of-life care: gathering suggestions from family members. Nurs Forum 1999; 34(2): 5-14.
58. Maslow AH. Motivation and personality. 2nd ed. New York: Harper and Row; 1979.
59. Albaugh JA. Spirituality and life-threatening illness: a phenomenological study. Oncol Nurs Forum 2003; 30(4): 593-598.
60. Breitbart W, Gibson C, Poppito SR, et al. Psychotherapeutic interventions at the end of life: a focus on meaning and spirituality. Can J Psychiatry 2004; 49(6): 366-372. (Pubitemid 38878667)
61. Buck HG. Spirituality: concept analysis and model development. Holist Nurs Pract 2006; 20(6): 288-292.
62. Chochinov HM, Cann BJ. Interventions to enhance the spiritual aspects of dying. J Palliat Med 2005; 8(1 Suppl): S103-S115.
63. Galek K, Flannelly KJ, Vane A, et al. Assessing a patient's spiritual needs: a comprehensive instrument. Holist Nurs Pract 2005; 19(2): 62-69.
64. Hermann CP. Spiritual needs of dying patients: a qualitative study. Oncol Nurs Forum 2002; 28(1): 67-72.
65. Hermann CR The degree to which spiritual needs of patients near the end of life are met. Oncol Nurs Forum 2007; 34(1): 70-78.
66. Highfield MF, Cason C. Spiritual needs of cancer patients: are they recognized? Cancer Nurs 1983; 6(3): 187-192.
67. Field MJ, Cassei CK, editors. Approaching death: improving care at the end of life. Washington: Institute of Medicine, National Academy; 1997.
68. Leung KK, Chiu TY, Chen CY. The influence of awareness of terminal condition on spiritual well-being in terminal cancer patients. J Pain Symptom Manag 2006; 31 (5): 449-456.
69. Murray SC, Kendall M, Boyd K, et al. Exploring the spiritual needs of people dying of lung cancer or heart failure: a prospective qualitative interview study of patients and their carers. Palliat Med 2004; 18(1): 39-45. (Pubitemid 38220061)
70. Puchalski CM, Lunsford B, Harris MH, et al. Interdisciplinary spiritual care for seriously ill and dying patients: a collaborative model. Cancer J 2006; 12(5): 398-416. (Pubitemid 44564823)
71. Mishler EG. Research interviewing: context and narrative. Cambridge: Harvard University Press; 1991.
72. Clandinin DJ, Connelly FM. Narrative inquiry: experience and story in qualitative research. San Francisco: Jossey-Bass; 2000.