Awareness of dying: it needs words
Tóm tắt
The purpose of this research is to study to what extent dying patients are aware of the imminence of death, whether such awareness is associated with patient characteristics, symptoms and acceptance of dying, and whether medical records and nurses’ and family caregivers’ views on patients’ awareness of dying agree. Nurses and family caregivers of 475 deceased patients from three different care settings in the southwest Netherlands were requested to fill out questionnaires. The two groups were asked whether a patient had been aware of the imminence of death. Also, medical records were screened for statements indicating that the patient had been informed of the imminence of death. Nurses completed questionnaires about 472 patients, family caregivers about 280 patients (response 59%). According to the medical records, 51% of patients had been aware of the imminence of death; according to nurses, 58%; according to family caregivers, 62%. Patients who, according to their family caregiver, had been aware of the imminence of death were significantly more often in peace with dying and felt more often that life had been worth living. Inter-rater agreement on patients’ awareness of dying was fair (Cohen’s kappa = 0.23–0.31). Being aware of dying is associated with acceptance of dying, which supports the idea that open communication in the dying phase can contribute to the quality of the dying process. However, views on whether or not patients are aware of the imminence of death diverge between different caregivers. This suggests that communication in the dying phase of patients is open for improvement.
Tài liệu tham khảo
Clark D (2002) Between hope and acceptance: the medicalisation of dying. BMJ 324(7342):905–907
Field D, Copp G (1999) Communication and awareness about dying in the 1990s. Palliat Med 13(6):459–468
Goldsteen M et al (2006) What is a good death? Terminally ill patients dealing with normative expectations around death and dying. Patient Educ Couns 64(1–3):378–386
Smith R (2000) A good death. An important aim for health services and for us all. BMJ 320(7228):129–130
Steinhauser KE et al (2001) Preparing for the end of life: preferences of patients, families, physicians, and other care providers. J Pain Symptom Manage 22(3):727–737
Rietjens JA et al (2006) Preferences of the Dutch general public for a good death and associations with attitudes towards end-of-life decision-making. Palliat Med 20(7):685–692
Francke AL, Willems DL (2005) Terminal patients' awareness of impending death: the impact upon requesting adequate care. Cancer Nurs 28(3):241–247
McGrath P (2002) End-of-life care for hematological malignancies: the 'technological imperative' and palliative care. J Palliat Care 18(1):39–47
Stevenson J, Ellershaw J (2008) Prognostication in the imminently dying patient. In: Glare P, Christakis NA (eds) Prognosis in advanced cancer. Oxford University Press, New York
Veerbeek L et al (2008) Does recognition of the dying phase have an effect on the use of medical interventions? J Palliat Care 24(2):94–99
Ellershaw J (2003) Introduction. In: Ellershaw J, Wilkinson S (eds) Care of the dying. Oxford University Press, New York
Ellershaw J, Ward C (2003) Care of the dying patient: the last hours or days of life. BMJ 326(7379):30–34
Ellershaw JE et al (1997) Developing an integrated care pathway for the dying patient. Eur J Palliat Care 4:203–207
Ellershaw J et al (2001) Care of the dying: setting standards for symptom control in the last 48 hours of life. J Pain Symptom Manage 21(1):12–17
Kinder C, Ellershaw J (2003) How to use the Liverpool Care pathway for the dying patient? In: Ellershaw J, Wilkinson S (eds) Care of the dying. Oxford University Press, New York
van der Heide A et al (2010) End-of-life decision making for cancer patients in different clinical settings and the impact of the LCP. J Pain Symptom Manage 39(1):33–43
Veerbeek L et al (2008) Using the LCP: bereaved relatives' assessments of communication and bereavement. Am J Hosp Palliat Care 25(3):207–214
Veerbeek L et al (2006) Audit of the Liverpool Care Pathway for the dying patient in a Dutch cancer hospital. J Palliat Care 22(4):305–308
Veerbeek L et al (2008) The effect of the Liverpool Care Pathway for the dying: a multi-centre study. Palliat Med 22(2):145–151
Sneeuw KC et al (1998) Comparison of patient and proxy EORTC QLQ-C30 ratings in assessing the quality of life of cancer patients. J Clin Epidemiol 51(7):617–631
Chochinov HM et al (2002) Dignity in the terminally ill: a cross-sectional, cohort study. Lancet 360(9350):2026–2030
Coyle N et al (1990) Character of terminal illness in the advanced cancer patient: pain and other symptoms during the last four weeks of life. J Pain Symptom Manage 5(2):83–93
Klinkenberg M et al (2004) Symptom burden in the last week of life. J Pain Symptom Manage 27(1):5–13
Lichter I, Hunt E (1990) The last 48 hours of life. J Palliat Care 6(4):7–15
Landis JR, Koch GG (1977) The measurement of observer agreement for categorical data. Biometrics 33(1):159–174
Glaser BG, Strauss AL (1965) Awareness of dying. Aldine, Chicago
Seale C, Addington-Hall J, McCarthy M (1997) Awareness of dying: prevalence, causes and consequences. Soc Sci Med 45(3):477–484
Coventry PA et al (2005) Prediction of appropriate timing of palliative care for older adults with non-malignant life-threatening disease: a systematic review. Age Ageing 34(3):218–227
Murtagh FE, Preston M, Higginson I (2004) Patterns of dying: palliative care for non-malignant disease. Clin Med 4(1):39–44
Gibbins J et al (2009) Diagnosing dying in the acute hospital setting—are we too late? Clin Med 9(2):116–119
Glare P et al (2003) A systematic review of physicians' survival predictions in terminally ill cancer patients. BMJ 327(7408):195–198
Higginson IJ, Costantini M (2002) Accuracy of prognosis estimates by four palliative care teams: a prospective cohort study. BMC Palliat Care 1(1):1
Rich SE, Williams CS, Zimmerman S (2009) Concordance of family and staff member reports about end of life in assisted living and nursing homes. Gerontologist 50(1):112–120
World Health Organization (2010) Available from: http://www.who.int/whosis/whostat/EN_WHS10_Full.pdf. Accessed 16 Oct 2010
Statistics Netherlands. Gezondheid en zorg in cijfers. 2009
Statistics Netherlands. Central Death Registry. 2007