Improvement in the quality of end-of-life (EOL) care is a priority health care issue since serious deficiencies in quality of care have been reported across care settings. Increasing pressure is now focused on Canadian health care organizations to be accountable for the quality of palliative and EOL care delivered. Numerous domains of quality EOL care upon which to create accountability frameworks are now published, with some derived from the patient/family perspective. There is a need to reach common ground on the domains of quality EOL care valued by patients and families in order to develop consistent performance measures and set priorities for health care improvement. This paper describes a meta-synthesis study to develop a common conceptual framework of quality EOL care integrating attributes of quality valued by patients and their families.
Get full access to this article
View all access options for this article.
References
1.
LynnJ.Serving patients who may die soon and their families. JAMA2001; 285(7): 925–932.
2.
CarstairsS.Quality End-of-Iife Care: The Right of Every Canadian.Ottawa, Ontario: Subcommittee of the Standing Senate Committee on Social Affairs, Science, and Technology, June 2000.
3.
LynnJ., HarrellFJr., CohnF., WagnerD., ConnorsAFJr.(SUPPORT Study Investigators). Prognoses of seriously ill hospitalized patients on the days before death: implications for patient care and public policy, New Horiz1997; 5: 56–61.
4.
HintonJ.Can home care maintain an acceptable quality of life for patients with terminal cancer and their relatives?Palliat Med1994; 8: 18–31.
5.
BernabeiR., GambassiG., LapaneK., LandiF., GatsonisC., DunlopR.Management of pain in elderly patients with cancer. SAGE Study Group. Systematic assessment of geriatric drug use via epidemiology. JAMA1998; 279: 1877–1882.
6.
FaheyT., MontgomeryA.A., BarnesJ., ProtheroeJ.Quality of care for elderly residents in nursing homes and elderly people living at home: controlled observational study. BMJ2003; 326: 1–5.
7.
BlackD., BowmanC.Community institutional care for frail elderly people. BMJ1997; 315: 441–442.
8.
PatrickD.L., CurtisR., EngelbergR.A., NeilsonE., McCowanE.Measuring and improving the quality of dying and death. Ann Intern Med2003; 139(5 Pt 2): 410–415.
9.
TenoJ.M., ByockI., FieldM.J.Research agenda for developing measures to examine quality of care and quality of life of patients diagnosed with life-limiting illness, J Pain Symptom Manage1999; 17: 75–82.
10.
LynnJ.Measuring quality of care at the end of life: a statement of principles. J Am Geriatr Soc1997; 45: 526–527.
11.
StewartA.I., TenoJ., PatrickD.L., LynnJ.The concept of quality-of-life of dying persons in the context of health care. J Pain Symptom Manage1999; 17(2): 93–108.
12.
EmanuelE., EmanuelL.The promise of a good death. Lancet1998; 251(Suppl 2): 21–29.
13.
Institute of Medicine.Crossing the Quality Chasm: a new health system for the 21st century. Committee on Quality of Health Care in America.Washington, D.C.: National Academy Press, 2001; p. 300.
14.
TenoJ.Executive summary of the conference on making a Toolkit of Instruments to Measure EOL care (TIME). Center to Improve Care of the Dying, George Washington University, Web site. Available at: http://www.gwu.edu/-cicd/toolkit/time.htm. Accessed November 1, 2003.
15.
FowlerFJJr., CoppolaK.M., TenoJ.M.Methodological challenges for measuring quality of care at the end of life. J Pain Symptom Manage1999; 17: 114–119.
SteinhauserK.E., ChristakisN.A., ClippE.C., McNeillyM., MclntyreL., TulskyJ.A.Factors considered important at the EOL by patients, family, physicians and other care providers, JAMA2000; 284(19): 2476–2482.
18.
SteinhauserK.Preparing for the end of life: preferences of patients, families, physicians and other providers. J Pain Symptom Manage2001; 22(3): 727–737.
19.
TenoJ.M., CaseyV.A., WelchL.C., Edgman-LevitanS.Patient-focused, family-centered EOL medical care: view of the guidelines and bereaved family members. J Pain Symptom Manage2001; 22: 738–751.
20.
SandelowskiM., DochertyS., EmbdenC.Qualitative meta-synthesis: issues and techniques. Res Nurs Health1997; 20: 365–371.
21.
JensenL.A., AllenM.N.A synthesis of qualitative research on wellness-illness. Qual Health Res1994; 4: 349–369.
22.
SchreiberK.M., CrooksD., SternP.N.Qualitative meta-synthesis. In: MorseJ.M. (ed). Completing a Qualitative Project: details and dialogue.Thousand Oaks, California: Sage, 1997; pp. 311–326.
23.
NoblitG.W., HareR.D.Meta-Ethnography-Synthesizing Qualitative Studies.Newbury Park, California: Sage, 1988.
24.
EstabrooksC.A., FieldP.A., MorseJ.M.Aggregating qualitative findings: an approach to theory development. Qual Health Res1994; 4: 503–511.
25.
MilesM.B., HubermanA.M.Qualitative Data Analysis: an expanded sourcebook. 2nd edition.Thousand Oaks, California: Sage, 1994.
26.
FinfgeldD.L.Metasynthesis: the state of the art so far. Qual Health Res2003; 13(7): 893–904.
27.
SandelowskiM., BarrosoJ.Classifying the findings in qualitative studies. Qual Health Res2003; 13(7): 905–923.
28.
PayneS.A., Langley EvansA., HillierR.Perceptions of a good death: a comparative study of the views of hospice staff and patients. Palliat Med1996; 10: 307–312.
29.
PiersonC.M.A good death: a qualitative study of patients with advanced AIDS. AIDS Care2002; 14(5): 587–598.
30.
YurkR.Understanding the continuum of palliative care for patients and their caregivers. J Pain Symptom Manage2002; 24(5): 459–470.
31.
SteinhauserK.E., ClippE.C., McNeillyM., ChristakisN.A., MclntyreL.M., TulskyJ.A.In search of a good death: observations of patients, families, and providers. Ann Intern Med2000; 132(10): 825–832.
32.
VigE.Good deaths, bad deaths, and preferences for end of life: a qualitative study of geriatric outpatients. J Am Geriatr Soc2002; 50: 1541–1548.
33.
SteinhauserK.In search of a good death: observations of patients, families and providers. Ann Intern Med2000; 132(10): 825–832.
34.
BosekM.S.D., LowryE., LindemanD., BurckJ.R., GwytherL.P.Promoting a good death for persons with dementia in nursing facilities: family caregivers’ perspectives. JONAS Healthc Law Ethics Regul2003; 5(2): 34–41.
35.
CohenL.M., PoppelD.M., CohnG.M., ReiterG.S.A very good death: measuring quality of dying in end-stage renal disease. J Palliat Med2001; 4(2): 167–171.
36.
CurtisR.J., PatrickD.L., EngelbergR.A., NorrisK., AspC., ByockI.A measure of the quality of dying and death: initial validation using after-death interviews with family members. J Pain Symptom Manage2002; 24(1): 17–31.
37.
EmanuelL.L., AlportH.R., BaldwinD., EmanuelE.J.What terminally ill patients care about: toward a validated construct of patients’ perspective. J Palliat Med2000; 3(4): 419–431.
38.
HansonL., HendersonM., MenonM.As individual as death itself: a focus group study of terminal care in nursing homes. J Palliat Med2002; 5: 117–125.
39.
KristjansonL.Quality of terminal care: salient indicators identified by families. J Palliat Care1989; 5(1): 21–28.
40.
McCarthyE.Dying with cancer: patients’ function, symptoms, and care preferences as death approaches. J Am Geriatr Soc2000; 48(5): 110–121.
41.
ThomeS., PatersonB., AcornS., CanamC., JoachimG., JillingsC.Chronic illness experience: insights from a meta-study. Qual Health Res2002; 12(4): 437–452.
42.
BeauchampT.L., ChildressJ.F.Principles of Biomedical Ethics. 4th edition.New York, New York: Oxford University Press, 1994.
43.
HiltonB.A.Family decision-making process about early stage breast cancer treatment. Can Oncol Nurs J1994; 4(1): 9–16.
44.
HeylandD.K., DodekP. (CARENET Research Group). What matters in EOL care: perceptions of seriously ill patients and their family members. [In press.]
45.
ChochinovH.M.Dignity conserving care: a new model for palliative care: helping the patient feel valued. JAMA2002; 28: 2253–2260.
