Objective: To explore, over a one-year period, the ideas and attitudes of patients with end-stage cardiac failure concerning dying. Design: Prospective longitudinal multiple case study using qualitative interview techniques. Participants: Thirty-one patients from two hospitals who fulfilled one or more of the following criteria: NYHA III or IV, ejection fractionB >25%, at least one hospitalization for heart failure. Main outcomes: Statements of patients with advanced heart failure, expressed in semi-structured interviews, concerning the quality of dying and medical decisions at the end of life. Results: Many respondents only thought about death during exacerbations. Mentioned aspects of appropriate dying include: a degree of usefulness, prognostic knowledge, appropriate duration and mental awareness. Few respondents were in favour of euthanasia or suicide, but all wanted life-prolonging treatment to be withheld or withdrawn when appropriate. Conclusions: Our study found some elements of ‘appropriate dying’ that differ from other studies and that are relatively specific for advanced heart failure. The tendency of patients not to think about death raises ethical concerns.
Clark J . Patient centred death . BMJ2003; 327: 174-175 .
2.
Cowie MR , Mosterd A , Wood DA , et al. The epidemiology of heart failure . Eur Heart J1997; 18: 208-225 .
3.
Davis RC , Hobbs FDR , Lip GYH . ABC of heart failure: history and epidemiology . BMJ2000; 320: 39-42 .
4.
Bonneux L , Barendregt JJ , Meeter K , Bonsel GJ , van der Maas PJ . Estimating clinical morbidity due to ischemic heart disease and congestive heart failure: the future rise of heart failure . Am J Public Health1994; 84: 20-28 .
5.
Mosterd A , Hoes AW , de Bruyne MC , et al. Prevalence of heart failure and left ventricular dysfunction in the general population; The Rotterdam Study . Eur Heart J1999; 20: 447-455 .
6.
Reitsma JB , Mosterd A , de Craen AJ , et al. Increase in hospital admission rates for heart failure in The Netherlands, 1980-1993 . Heart1996; 76: 388-392 .
7.
Addington-Hall J , McCarthy M . Regional Study of Care for the Dying: methods and sample characteristics . Palliat Med1995; 9: 27-35 .
8.
Fox E , Landrum-McNiff K , Zhong Z , Dawson NV , Wu AW , Lynn J . Evaluation of prognostic criteria for determining hospice eligibility in patients with advanced lung, heart, or liver disease. SUPPORT Investigators. Study to Understand Prognoses and Preferences for Outcomes and Risks of Treatments . JAMA1999; 282: 1638-1645 .
9.
Gibbs LM , Addington-Hall J , Gibbs JS . Dying from heart failure: lessons from palliative care. Many patients would benefit from palliative care at the end of their lives . BMJ1998; 317: 961-962 .
10.
McCarthy M , Lay M , Addington-Hall J . Dying from heart disease . J R Coll Physicians Lond1996; 30: 325-328 .
11.
Candlish P , Watts P , Redman S , Whyte P , Lowe J . Elderly patients with heart failure: a study of satisfaction with care and quality of life . Int J Qual Health Care1998; 10: 141-146 .
12.
Stanek EJ , Oates MB , McGhan WF , Denofrio D , Loh E . Preferences for treatment outcomes in patients with heart failure: symptoms versus survival . J Card Fail2000; 6: 225-232 .
13.
Havranek EP , McGovern KM , Weinberger J , Brocato A , Lowes BD , Abraham WT . Patient preferences for heart failure treatment: utilities are valid measures of health-related quality of life in heart failure . J Card Fail1999; 5: 85-91 .
14.
Califf RM , Vidaillet H , Goldman L . Advanced congestive heart failure: What do patients want?Am Heart J1998; 135: S320-S326 .
15.
Levenson JW , McCarthy EP , Lynn J , Davis RB , Phillips RS . The last six months of life for patients with congestive heart failure . JAGS2000; 48: S101-S109 .
16.
Fried TR , van Doorn C , O'Leary JR , Tinetti ME , Drickamer MA . Older person's preferences for home vs hospital care in the treatment of acute illness . Arch Intern Med2000; 160: 1501-1506 .
17.
Fried TR , Bradley EH , Towle VR , Allore H . Understanding the treatment preferences of seriously ill patients . N Engl J Med2002; 346: 1061-1066 .
18.
Steinhauser KE , Clipp EC , McNeilly M , Christakis NA , McIntyre LM , Tulsky JA . In search of a good death: observations of patients, families, and providers . Ann Intern Med2000; 132: 825-832 .
19.
Steinhauser KE , Christakis NA , Clipp EC , McNeilly M , McIntyre L , Tulsky JA . Factors considered important at the end of life by patients, family, physicians, and other care providers . JAMA2000; 284: 2476-2482 .
20.
Emanuel EJ , Fairclough DL , Emanuel LL . Attitudes and desires related to euthanasia and physician-assisted suicide among terminally ill patients and their caregivers . JAMA2000; 284: 2460-2468 .
21.
Britten N . Qualitative interviews in medical research . BMJ1995; 311: 251-253 .
22.
Yin RK . Case study research: design and methods. Newbury Park, CA: Sage , 1994.
23.
Criteria Committee of the New York Heart Association . Nomenclature and criteria for diagnosis. Diseases of the heart and blood vessels. Boston, MA: Little, Brown & Co , 1973.
24.
The AM , Hak T , Koeter G , van der Wal G . Collusion in doctor-patient communication about imminent death: an ethnographic study . BMJ2000; 321: 1376-1381 .
25.
Nohria A , Lewis E , Stevenson LW . Medical management of advanced heart failure . JAMA2002; 287: 628-640 .
26.
Stewart S , MacIntyre K , Hole DJ , Capewell S , McMurray JJV . More ‘malignant’ than cancer? Five-year survival following a first admission for heart failure . Eur J Heart Fail2001; 3: 315-322 .
27.
Fox E , Landrum K , Zhong Z , Dawson NV , Wu AW , Lynn J . Evaluation of prognostic criteria for determining hospice eligibility in patients with advanced lung, heart, or liver disease . JAMA1999; 282: 1638-1645 .
