Palliative care research: methodological and ethical challenges

Dean, Ruth Anne Kinsman; McClement, Susan

doi:10.12968/ijpn.2002.8.8.10681

Cited by 55 publications

(37 citation statements)

References 9 publications

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“…The relatively straightforward design of this study facilitated successful accrual in a setting (community) and population (cancer patients who were quite unwell, as reflected in baseline quality of life scoring) that are rarely described or studied in detail and in sufficient numbers. The complexities and barriers to completing studies in these settings are well documented (Dean & McClement, 2002;McWhinney, Bass, & Donner, 1994). Our accrual is consistent with other population-based studies of cancer patients especially in unwell/palliative populations, where the intensity of measures is perceived to be an excessive burden leading to refusal (Cohen et al 1997;Gunn, Todd, Barclay, & Farquhar, 1999) and dropouts are high due to the natural history of the illness over the study period.…”

Section: Impact Of Specialized Oncologysupporting

confidence: 83%

The Impact of Specialized Oncology Nursing on Patient Supportive Care Outcomes

Sussman

Howell

Bainbridge

et al. 2011

Journal of Psychosocial Oncology

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Meeting the supportive care needs of cancer patients remains a challenge to cancer care systems around the world. Despite significant improvements in the organization of medical care of patients with cancer, numerous surveys of cancer populations demonstrate that significant proportions of patients fail to have their supportive care needs met. One possible solution is the introduction of a care coordinator role using oncology nursing to help ensure that patients' physical, psychological, and social support needs are addressed. Although having face validity, there is little empirical evidence on the effects of nurse-led supportive care coordinator roles on patient reported supportive care outcomes. In this article the authors present the results of a prospective longitudinal cohort study of 113 patients referred to a community-based specialist oncology nursing program. Using validated instruments they found significant improvements in patient-reported outcomes in key supportive care domains: unmet needs, quality of life, and continuity of care, as well as a shift in patterns of health resource utilization from acute care settings to the community over the course of the intervention. The results of this study are important in supporting the design and development of controlled trials to examine provider roles in the coordination of supportive cancer care.

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Section: Impact Of Specialized Oncologysupporting

confidence: 83%

The Impact of Specialized Oncology Nursing on Patient Supportive Care Outcomes

Sussman

Howell

Bainbridge

et al. 2011

Journal of Psychosocial Oncology

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“…[2][3][4][5][6][7][8][9][10][11] Measuring the quality of end-of-life care is methodologically challenging and can present serious threats to study validity. [12][13][14][15][16] A measure's reliability depends on its ability to be completed by the target population. A measure's validity is determined by the extent to which it captures aspects of quality-of-life and end-of-life care that are valued by patients and families.…”

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confidence: 99%

Proxy perspectives regarding end‐of‐life care for persons with cancer

Bakitas

Ahles

Skalla

et al. 2008

Cancer

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BACKGROUNDEach year, greater than a half million people die of cancer in the U.S. Despite progress in increasing access to palliative oncology services, end‐of‐life care still needs improvement. Measuring the quality of the end‐of‐life experience is difficult because of patient debility and reduced consciousness as death approaches. Family proxies have been proposed as valuable informants regarding the quality of end‐of‐life care. This article describes family proxy perspectives concerning care at the end of life in patients who died of advanced cancer.METHODSIn the context of a novel outpatient palliative care demonstration project, 125 family proxy respondents completed a structured survey by telephone 3 months to 6 months after the patient's death from breast, lung, or gastrointestinal cancer. Four key quality of care indicators were measured: decision‐making and physician communication, location of death, hospice involvement, and end‐of‐life symptoms.RESULTSProxies reported that 78% to 81% of patients completed at least 1 form of advance directive and approximately half of them were helpful in guiding care. Communication with physicians regarding end‐of‐life treatment wishes occurred in 67% of cases, but only 57% of the patients actually made a plan with their physician to ensure that their wishes were followed. The majority of patients died in their location of choice, most often at home, and greater than half had hospice involvement for an average of 41.8 days before death. During the last week of life, the majority of patients experienced troublesome physical and emotional symptoms.CONCLUSIONSMeasurement of proxy perspectives is feasible as an indicator of the quality of end‐of‐life care, and the results of the current study provide actionable data for areas of improvement in palliative oncology care. Cancer 2008. © 2008 American Cancer Society.

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“…Due to the potentially declining condition of the patient at the end of life, the patient should be asked at each visit whether he or she is willing to continue his or her participation in the study. 54 Cognitive impairment, including memory loss and confusion, can negatively affect the reliability of the data as well as the ability to provide continuing informed consent.…”

Section: Role Of Significant Othersmentioning

confidence: 99%

Self-care at the End of Life in Patients With Heart Failure

Zambroski

2008

Journal of Cardiovascular Nursing

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Promoting adherence to self-care illness management strategies among patients with heart failure (HF) has been associated with a number of positive health outcomes. Yet, little is known about health outcomes related to self-care in the "sickest of the sick"-those patients with advanced HF who are approaching the end of life. Clinicians and researchers must determine how self-care interventions are defined in the advanced HF population. For example, what is meant by self-care illness management in patients who are symptomatic with exertion may differ from that of patients who are predominantly symptomatic at rest. Our challenge is to develop the simplest, least burdensome self-care illness management interventions that target the most meaningful outcomes for patients, their families, and the healthcare system.

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Palliative care research: methodological and ethical challenges

Cited by 55 publications

References 9 publications

The Impact of Specialized Oncology Nursing on Patient Supportive Care Outcomes

The Impact of Specialized Oncology Nursing on Patient Supportive Care Outcomes

Proxy perspectives regarding end‐of‐life care for persons with cancer

Self-care at the End of Life in Patients With Heart Failure

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