The aim of this qualitative study was to clarify how terminally ill elderly patients in acute wards perceive the end of life and what are their needs and wishes regarding care. The patients, despite their advanced illness, wished to be treated actively and hoped for more conversations with doctors about active care. They were content with their daily care but evaluated the care in light of the great workload of the nurses, forgiving them for not having time to talk to individual patients. They had specific modest wishes, but were reluctant to express even these because of concern about troubling their caregivers. We conclude that death remained a distant abstraction for these patients with a terminal prognosis. The challenge is to create an intimate caring atmosphere, where the issues related to dying may be elaborated in interaction and the last wishes expressed in a safe atmosphere.
Get full access to this article
View all access options for this article.
References
1.
AroraN. K., & McHorneyC. A. (2000). Patient preferences for medical decision making. Who really wants to participate?Medical Care, 38, 335–341.
2.
Beck-FriisB., & StrangP. (1993). The family in hospital-based home care with special reference to terminally ill cancer patients. Journal of Palliative Care, 9, 5–13.
3.
BowersB. J.FibichB., & JacobsonN. (2001). Care-as-service, care-as-relating, care-as-comfort: Understanding nursing home residents' perceptions of quality. Gerontology, 41(4), 539–545.
4.
ButlerR. N. (1968). Toward a psychiatry of the life-cycle: Implications of socio-psychologic studies of the aging process for the psychotherapeutic situation. Psychiatric Research Reports American Psychiatric Association, 23, 233–248.
5.
Centeno-CortésC., & Núñez-OlarteJ. M. (1994). Questioning diagnosis disclosure in terminal cancer patients: A prospective study evaluating patients' responses. Palliative Medicine, 8, 39–44.
6.
ChochinovH. M.TatarynD.ClinchJ. J., & DudgeonD. (1999). Will to live in the terminally ill. Lancet, 354, 816–819.
7.
Delvecchio GoodM. J.GoodB. J.SchafferC., & LindS. E. (1990). American oncology and the discourse on hope. Culture, Medicine & Psychiatry, 14, 59–79.
8.
EmanuelE. J., & EmanuelL. L. (1998). The promise of a good death. Lancet, 351(suppl. II), 21–29.
9.
EndeJ.KazisL.AshA., & MoskowitzM. A. (1989). Measuring patients' desire for autonomy: Decision making and information-seeking preferences among medical patients. Journal of General Internal Medicine, 4, 23–30.
10.
EngleV. F.Fox-HillE.GraneyM. J. (1998). The experience of living-dying in a nursing home: Self-reports of black and white older adults. Journal of the American Geriatric Society, 46, 1091–1096.
11.
EskolaJ., & SuorantaJ. (1998). Guidance for qualitative research.Tampere: Vastapaino. (in Finnish)
12.
GlaserB. G., & StraussA. L. (1965). Awareness of dying.Chicago, IL: Aldine.
13.
GolinC. E.WengerN. S.LiuH.DawsonN. V.TenoJ. M.DesbiensN. A.LynnJ.OyeR. K.PhillipsR. S. (2000). A prospective study of patient-physician communication about resuscitation. Journal of the American Geriatric Society, 48, S52–S60.
14.
GordonD. R. (1990). Embodying illness, embodying cancer. Culture, Medicine & Psychiatry, 14, 275–297.
15.
HigginsonI.PriestP., & McCarthyM. (1994). Are bereaved family members a valid proxy for a patient's assessment of dying?Social Science and Medicine, 38, 553–557.
16.
HintonJ. (1996). How reliable are relatives' retrospective reports of terminal illness? Patients' and relatives' accounts compared. Social Science and Medicine, 43, 1229–1236.
17.
HintonJ. (1999). The progress of awareness and acceptance of dying assessed in cancer patients and their caring relatives. Palliative Medicine, 13, 19–35.
18.
Kübler-RossE. (1970). On death and dying.New York: Macmillan.
19.
LatimerE. (1991). Caring for seriously ill and dying patients: The philosophy and ethics. Canadian Medical Association Journal, 144, 859–867.
20.
LynnJ. (1997). Measuring quality of care at the end of life: A statement of principles. Journal of the American Geriatric Society, 45, 526–527.
21.
MiettinenT. T.TilvisR. S.KarppiP., & ArveS. (1998). Why is the pain relief of dying patients often unsuccessful? The relatives' perspectives. Palliative Medicine, 12, 429–435.
22.
PuchalskiC. M.ZhongZ.JacobsM. M.FoxE.LynnJ.HarroldJ.GalanosA.PhillipsR. S.CaliffR., and TenoJ. M. (2000). Patients who want their family and physician to make resuscitation decisions for them: Observations from SUPPORT and HELP. Journal of the American Geriatric Society, 48, S84–S90.
23.
PopeC., & MaysN. (1996). Qualitative research in health care.London, Tavistock square: BMJ publishing group. BMA house.
24.
RosenfeldK. E.WengerN. S., & Kagawa-SingerM. (2000). End-of-life decision making. Journal of General Internal Medicine, 15, 620–625.
25.
RosenfeldK. E.WengerN. S.PhillipsR. S.ConnorsA. F.DawsonN. V.LaydeP.CaliffR. M.LiuH.LynnJ.OyeR. K. (1996). Factors associated with change in resuscitation preference of seriously ill patients. Archives of Internal Medicine, 156, 1558–1564.
26.
SealeC. (1998). Theories and studying the care of dying people. British Medical Journal, 317, 1518–1520.
27.
SealeC.Addington-HallJ., & McCarthyM. (1997). Awareness of dying: Prevalence, causes and consequences. Social Science and Medicine, 45, 477–484.
SingerP. A.MartinD. K.KelnerM. (1999). Quality end-of-life care: Patients' perspectives. Journal of the American Medical Association, 281, 163–168.
30.
SlevinM. L.PlantH.LynchD.DrinkwaterJ., & GregoryW. M. (1988). Who should measure quality of life, the doctor or the patient?British Journal of Cancer, 57, 109–112.
31.
TsevatJ.DawsonN. V.WuA. W.LynnJ.SoukupJ. R.CookE. F.VidailletH., & PhillipsR. S. (1998). Health values of hospitalized patients 80 years or older. Journal of the American Medical Association, 279, 371–375.
32.
UhlmannR. F., & PearlmanR. A. (1991). Perceived quality of life and preferences for life-sustaining treatment in older adults. Archives of Internal Medicine, 151, 495–497.
33.
WalkerR. M.SchonwetterR. S.KramerD. R., & RobinsonB. E. (1995). Living wills and resuscitation preferences in an elderly population. Archives of Internal Medicine, 155, 171–175.
