Toward optimal end-of-life care for patients with advanced chronic obstructive pulmonary disease: insights from a multicentre study
Female; Humans; Male; Survival Rate; Aged; Middle Aged; Pulmonary Disease; retrospective studies; Patient Satisfaction/statistics & numerical data; Ontario/epidemiology; Terminal Care/standards; Quality of Health Care/standards; Nova Scotia/epidemiology; British Columbia/epidemiology; Alberta/epidemiology; Chronic Obstructive/mortality/therapy
BACKGROUND: Understanding patients' needs and perspectives is fundamental to improving end-of-life (EOL) care. However, little is known of what quality care means to patients who have advanced lung disease. OBJECTIVES: To describe ratings of importance and satisfaction with elements of EOL care, informational needs, decision-making preferences, obstacles to a preferred location of death, clinical outcomes, and health care use before and during an index hospital admission for patients who have advanced chronic obstructive pulmonary disease (COPD). METHODS: A questionnaire with regard to quality EOL care was administered to patients older than 55 years of age who had advanced medical disease in five Canadian teaching hospitals. RESULTS: For 118 hospitalized patients who had advanced COPD, the following items were rated as extremely important for EOL care: not being kept alive on life support when there is little hope for meaningful recovery (54.9% of respondents), symptom relief (46.6%), provision of care and health services after discharge (40.0%), trust and confidence in physicians (39.7%), and not being a burden on caregivers (39.6%). Compared with patients who had metastatic cancer, patients with COPD had lower (P<0.05) satisfaction with care, interest in information about prognosis, cardiopulmonary resuscitation or mechanical ventilation, and referral rates to palliative care, whereas use of acute care services was higher (P<0.05) for patients who had advanced COPD. CONCLUSION: Canadian patients who have advanced COPD identify several priorities for improving care. Avoidance of prolonged or unwanted life support requires more effective communication, decision making and goal setting. Patients also deserve better symptom control and postdischarge strategies to minimize perceived burdens on caregivers, emergency room visits and hospital admissions.
2008
Rocker GM; Dodek PM; Heyland DK; Canadian Researchers at the End of Life Network
Canadian Respiratory Journal : Journal Of The Canadian Thoracic Society
2008
Article information provided for research and reference use only. PedPalASCNET does not hold any rights over the resource listed here. All rights are retained by the journal listed under publisher and/or the creator(s).
Journal Article
<a href="http://doi.org/10.1155/2008/369162" target="_blank" rel="noreferrer">10.1155/2008/369162</a>
Living with cerebral palsy and tube feeding: A population-based follow-up study
Child; Humans; Community Health Planning; Adult; Attitude to Health; Questionnaires; Follow-Up Studies; Survival Analysis; Activities of Daily Living; quality of life; adolescent; Preschool; Adaptation; Psychological; Caregivers/psychology; infant; Parents/psychology; Nutritional Failure; Cerebral Palsy/mortality/psychology/therapy; Enteral Nutrition/adverse effects/psychology; Gastrostomy/adverse effects/psychology; Jejunostomy/adverse effects/psychology; Nova Scotia/epidemiology; Precipitating Factors
OBJECTIVES: To assess the impact of surgically placed feeding tubes on children with severe cerebral palsy (CP) and their families and to determine the survival of these children after initiation of tube feeding (TF). METHODS: Virtually all children from Nova Scotia who had gastrostomy or jejunostomy procedures between the years 1980 and 1998 and who had been diagnosed with CP were identified. Caretakers of those children who had TF initiated in the last 8 years were evaluated by using a semi-structured interview. Names of children who had not had recent follow-up visits were submitted to the provincial Vital Statistics office to determine whether they had died. Data from patients who were tube-fed between 1980 and 1989 were then used in combination with data from the more recent cases to create a survival curve. RESULTS: A total of 61 children were identified; 16 had died. Forty of 45 eligible families were interviewed; 90% were pleased with the effect of TF on their child and family life. Negative reports were associated with increased stress related to feeding. Survival rates after gastrostomy and/or jejunostomy were 83% after 2 years and 75% after 7 years. CONCLUSIONS: In children with severe CF, initiation of TF improved the quality of life for both the child and family in 90% despite frequent minor complications.
1999
Smith SW; Camfield C; Camfield P
The Journal Of Pediatrics
1999
Article information provided for research and reference use only. PedPalASCNET does not hold any rights over the resource listed here. All rights are retained by the journal listed under publisher and/or the creator(s).
Journal Article
<a href="http://doi.org/10.1016/s0022-3476(99)70125-3" target="_blank" rel="noreferrer">10.1016/s0022-3476(99)70125-3</a>
End-of-life population study methods
Canada; Registries; Human; Nova Scotia/epidemiology; Neoplasms/epidemiology; Vital Statistics; Community Health Planning/statistics & numerical data; Palliative Care/organization & administration; Population Surveillance/methods; Terminal Care/organization & administration
2001
Johnston GM; Burge FI; Boyd CJ; MacIntyre M
Canadian Journal Of Public Health
2001
Article information provided for research and reference use only. PedPalASCNET does not hold any rights over the resource listed here. All rights are retained by the journal listed under publisher and/or the creator(s).
Journal Article
Identifying potential need for cancer palliation in Nova Scotia
Female; Male; Adult; Aged; Survival Analysis; Odds Ratio; 80 and over; Non-U.S. Gov't; retrospective studies; Human; Support; Middle Age; Nova Scotia/epidemiology; Referral and Consultation/statistics & numerical data; Comprehensive Health Care/utilization; Health Services Needs and Demand/statistics & numerical data; Neoplasms/mortality/radiotherapy; Palliative Care/utilization
OBJECTIVE: To assess the degree to which Nova Scotia cancer patients who may need palliative care are being referred to the comprehensive Halifax-based Palliative Care Program (PCP). METHODS: The authors conducted a retrospective, population-based study using administrative health data for all adults in Nova Scotia who died of cancer from 1988 to 1994. Proportions and odds ratios (ORs) were used to determine where there were differences in age, sex, place of residence, cancer cause of death, year of death and use of palliative radiotherapy between those who were referred to the PCP at the Halifax Infirmary and those who were not, and between those who were referred late (within 14 days of death) and those who were referred earlier. RESULTS: Of the 14,494 adults who died of cancer during the study period, 2057 (14.2%) were registered in the PCP. Within Halifax County, 1582 (36.4%) of the 4340 patients with terminal cancer were seen in the PCP. Predictors of PCP registration were residence in Halifax County (OR 19.2, 95% confidence interval [CI] 15.4-23.9), younger age compared with those 85 years of age or older (for those 20-54 years of age, OR 4.9, 95% CI 3.2-7.6; 55-64 years, OR 3.4, 95% CI 2.2-5.1; 65-74 years, OR 3.1, 95% CI 2.1-4.5; 75-84 years, OR 2.1, 95% CI 1.4-3.1), and having received palliative radiation (OR 1.8, 95% CI 1.5-2.2). PCP referral was associated directly with head and neck cancer (OR 5.4, 95% CI 3.0-9.7) and inversely with hematopoietic (OR 0.2, 95% CI 0.4-0.9), lymph node (OR 0.3, 95% CI 0.1-0.4) and lung (OR 0.6, 95% CI 0.4-0.9) cancer. Predictors of late referral (being referred to the PCP within 14 days of death) were age 65-84 years (OR 1.4, 95% CI 1.1-1.8) and 85 years and over (OR 1.8, 95% CI 1.1-3.0), no palliative radiation (OR 2.0, 95% CI 1.4-3.1) and cancer cause of death. People dying within 6 months of diagnosis were somewhat less likely to have been referred to the PCP (OR 0.8, 95% CI 0.6-0.9), but those who were referred were more likely to have been referred late (OR 2.6, 95% CI 2.0-3.5). INTERPRETATION: Referral to the PCP and earlier rather than late referral were more likely for younger people with terminal cancer, those who received palliative radiation and those living closer to the PCP. Referral rates also varied by cancer cause of death and the time between diagnosis and death.
1998
Johnston GM; Gibbons L; Burge FI; Dewar RA; Cummings I; Levy IG
Canadian Medical Association Journal
1998
Article information provided for research and reference use only. PedPalASCNET does not hold any rights over the resource listed here. All rights are retained by the journal listed under publisher and/or the creator(s).
Journal Article