It will be shown, through the presentation of recent research findings, that haematology is a neglected area in terms of sensitive care of the dying. The Australian evidence indicates that scant progress has been made in relation to even the most basic palliative care practices such as sensitive, honest information giving or appropriate referral to the palliative system. Rather, the data show that during the terminal trajectory, patients from these diagnostic groups and their families remain trapped in processes within the high-tech, curative system that are not responsive to the needs of the dying.
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References
1.
AndrykowskiM.BradyM.GeinerC.AltmaierE.BurishT.AntinJ.GingrichR.McGarigleC., & Henslee-DowneyP. (1995). “Returning to normal” following bone marrow transplantation: Outcomes, expectations and informed consent. Bone Marrow Transplantation, 15, 573–581.
2.
AltmaierE.GingrichR., & FyfeM. (1991). Two-year adjustment of bone marrow transplant survivors. Bone Marrow Transplantation, 7, 311–316.
3.
BairF. (1992). Cancer sourcebook (Health Reference Series, Vol. 1). Detroit, MI: Omnigraphics, Inc.
BuckmanR. (1998). Communication in palliative care: A practical guide. In DoyleD.HanksG., & MacDonaldN. (Eds.), Oxford textbook of palliative medicine (pp. 141–156). Oxford: Oxford Medical Publication.
6.
CousinsN. (1985). How patients appraise physicians. New England Journal of Medicine, 313, 1422–1424.
7.
DeVitaV.HellmanS., & RosenbergS. (Eds.). (1997). Cancer: Principles and practice of oncology (5th ed., pp. 238–264). Philadelphia: Lippincott-Raven Publishers.
8.
DeVriesJ. (1994). Cancer and leukaemia: An alternative approach.Edinburgh, Mainstream Publishing Company.
9.
DoyleD.HanksG., & MacDonaldN. (1998). Introduction, In DoyleD.HanksG., & MacDonaldN. (Eds.), Oxford textbook of palliative medicine.Oxford, Oxford Medical Publication.
10.
FallowfieldL. (1990). The quality of life: The missing measurement in health care (pp. 186–203). London: Souvenir Press.
11.
JonesA.MogaD., & DavieK. (1999). Transforming end-of-life care for the 21st century: The hospice vision. Journal of Palliative Medicine, 2(1), 9–14.
12.
JonesL. (1996). Progress in treating leukaemia. The Practitioner, 240, 80–86.
13.
JoskeD., & McGrathP. (2002). Implementing the holistic philosophy in cancer care: New directions for Sir Charles Gairdner Hospital, Austral-Asian Journal of Cancer, 2(1), 331–390.
14.
KaplanS.GreenfieldS., & WareJ. (1989). Impact of the doctor-patient relationship on the outcomes of chronic disease. In StewartM. & RoterD. (Eds.), Communicating with medical patients (pp. 228–245). Newbury Park: Sage Publications.
15.
KleinS. (1986). Hospice care. In HigbyD. (Ed.), Issues in supportive care of cancer patients.Lancaster: Martinus Nijhoff.
16.
KrisjansonL. (1989). Quality of terminal care: Salient indicators identified by families. Journal of Palliative Care, 5, 21–28.
17.
LeskoL.OstroffJ.MummaG.MashbergD., & HollandJ. (1992). Long-term psychological adjustment of acute leukemia survivors: Impact of bone marrow transplantation versus conventional chemotherapy. Psychosomatic Medicine, 54, 30–47.
18.
LeyP. (1988). Communicating with patients.London: Croom Helm.
19.
LichterI., & DavidsonG. (1981). Caring for the dying. New Zealand Medical Journal, 93, 15–18.
20.
LilleymanJ. (1994). Childhood leukaemia: The facts.Oxford: Oxford University Press.
21.
LinnM., & LinnB. (1986). Caring for the terminal patient. In StollB. (Ed.), Coping with cancer stress (pp. 155–156). Lancaster: Martinus Mijhoff.
22.
MacDonaldD. (1990). Hospice, entropy, and the 1990s: Toward a hospice world view. The American Journal of Hospice and Palliative Care, 7, 39–47.
23.
MacDonaldN. (1998). The interface between oncology and palliative medicine. In DoyleD.HanksG., & MacDonaldN. (Eds.), Oxford Textbook of Palliative Medicine (pp. 12–17). Oxford: Oxford Medical Publication.
24.
MaddocksI.BentleyL., & SheedyJ. (1994). Quality of life issues in patients dying from haematological diseases. Annals Academic Medicine Singapore, 23(2), 244–248.
25.
ManderT. (1997). Haematology and palliative care: An account of shared care for a patient undergoing bone marrow transplantation for chronic myeloid leukemia. International Journal of Nursing Practice, 3(1), 62–66.
26.
MarinakisT.PapadimitriouC., & FertakisA. (1993). QOL assessment in patients with AML. Quality of Life Research, 2 (Abstract), 68.
27.
McGrathP. (1995). It's OK to say no!: A Discussion of ethical issues arising from informed consent to chemotherapy. Cancer Nursing, 18(2), 97–103.
28.
McGrathP. (1999). Palliative care for patients with haematological malignancies—If not, what not?Journal of Palliative Care, 15(3), 24–30.
29.
McGrathP. (2000a). Informed consent to peripheral blood stem cell transplantation. Cancer Strategy, 2, 44–50.
30.
McGrathP. (2000b). Confronting Icarus: A psycho-social perspective on haematological malignancies.Aldershot, England: Ashgate.
31.
McGrathP. (2001a). Insights on the dying trajectory in haematology-oncology from the carer's perspective. Cancer Nursing, 24(5), 226–236.
32.
McGrathP. (2001b). Dying in the curative system—The haematology/oncology dilemma. The Australian Journal of Holistic Nursing.
33.
McGrathP. (2002). End-of-life care for haematological malignancies: The “technological imperative” and palliative care (pp. 226–236). Journal of Palliative Care, 18 (1)39–47.
34.
McGrathP. (2002). Qualitative findings on the experience of end-of-life care for haematological malignancies. American Journal of Hospice and Palliative Care, 19(2), 1–9.
35.
McGrathP., & KearlseyJ. (1995). Is there a better way? Bioethical reflections on palliative cytotoxic drug use. Palliative Medicine, 9(4) Editorial, 269–271.
36.
McGrathP., & NewellC. (2001). Insights on spirituality and serious illness from a patient's perspective, Interaction, 19(2), 1–9.
37.
McGrathP.YatesP.ClintonM., & HartG. (1998). “What do I say”: Qualitative findings on dilemmas in palliative care nursing. The Hospice Journal, 14(2), 17–33.
38.
PerssonL.HallbergI., & OhlssonO. (1995). Acute leukaemia and malignant lymphoma patients experiences of disease, treatment and nursing care during the active treatment phase: An explorative study. European Journal of Cancer Care, 4, 133–142.
39.
PolitD., & HunglerB. (1995). Nursing research; Principles and methods (5th ed.). Philadelphia: J. P. Lippincott Company.
40.
SchumacherA.KesslerT.BuchnerT.WewersD., & van de LooJ. (1998). Quality of life in adult patients with acute myeloid leukaemia receiving intensive and prolonged chemotherapy–A longitudinal study. Leukaemia, 12, 586–592.
41.
SouhamiR., & TobiasJ. (1995). Cancer and its management (2nd ed.). Cambridge, MA: Blackwell Science.
42.
StreubertJ., & CarpenterD. (1995). Qualitative research in nursing: Advancing the humanistic imperative.Philadelphia: J. P. Lippincott Company.
43.
TwycrossT., & LackS. (1990). Therapeutics in terminal cancer (pp. 209–215). London: Churchill Livingstone.
44.
ZittounR., & RuszniewskiM. (1993). Experience versus expectations of BMT: A case report. Quality of Life Research, 2 (Abstract), 67.
